T O P I C R E V I E W |
Ninibini |
Posted - Sep 06 2015 : 08:26:14 AM Hi girls -
I wouldn't even put any of this out there, but right now I'm desperate for help. Please help, if you are able. My husband has been suffering with constant, non-stop, round-the-clock debilitating migraines for a couple of years now. Well, in all fairness, he has had them for years, but never at this level of pain. On a scale of one to ten, his daily "normal" wake-up pain is about a six. It doesn't take much to raise that number to over the top of the scale. Most of the time he is at an 8 or 9. He has been on a horrific cycle of "try this, try that" medications and treatments, most recently having a round of 31+ botox shots in his head trying to ease the pain. After almost three weeks, he still cannot wear a ball cap or lay his head on a pillow. Most nights, he "sleeps" on his stomach, face down, holding his face in his hands. (He never gets real sleep or rest; he is exhausted and suffering with debilitating pain.) We saw his neurologist and he said that this reaction, though very rare, is definitely something they do see sometimes, but he says he still wants to continue with these injections two more times - in November and again in February. I can't even fathom what that will do to him, but the doctor is hopeful that these injections will eventually work. If it doesn't work after three rounds, they will have to try something else. If it does work, he is going to potentially need to have this poison injected into his head for the rest of his life!
My husband is changing. I hardly know him anymore. I am frightened for him and by the changes I am seeing in him. His pain is absolutely debilitating, and he is having a tough time coping with simple daily tasks, let alone anything more complex that would normally be easy and natural for him to do. They have done all sorts of tests, scans, etc. Right now he is exhibiting signs of dementia, but since all the scans are coming back "unremarkable" at this point, they're attributing all these other functioning and cognitive issues to the headaches and bi-polar disorder which apparently had gone un-diagnosed most of his life. The cognitive specialist has warned me not to get too excited over the tests coming back negative right now, though. He said it is quite possible that he has FTD (frontal temporal lobe disorder) or CTE (chronic traumatic encephalopathy - the disease many football players have as a result of brain injury), because he is definitely exhibiting signs of both. It just may be too early to detect at this point, and it could be a couple of years before we have any kind of diagnosis. The CTE can't actually be diagnosed until an autopsy! He is suffering beyond measure, nothing is working, and our lives are falling apart. I'm desperate - DESPERATE to help him.
We have tried gluten-free, we have tried wheat-free, we have tried meat-free, we have tried dairy-free, we have tried sugar-free, we have tried caffeine-free... If you can name a "-free," we've tried it. We don't drink or smoke or do drugs. He is usually more active than I am, but right now, understandably, he just can't do much at all. We do as much organic and natural as possible. We've tried incorporating supplements and vitamins and coconut oil to help. I've removed anything scented I can think of that may be lurking in our home. I've tried removing typical allergens from our diet and home (even plastics to the best of my ability), but we have a big old Victorian on a main street - dust bunnies do appear. I don't think I can even list all of the things we've done. They've tried him on so many different medications, but they all seem to just exacerbate his pain and other symptoms; and the roller-coaster of being on one thing and off another certainly did not help him. Right now, he is down to just one, and it is very mild. Understandably, he is not the same person anymore, and his behavior is so erratic and unpredictable. Most of the time he is withdrawn, angry... Anything that breaks his concentration causes him to blow, because he is trying so dang hard to concentrate on the task at hand. His demands are unreasonable, his thinking is heavily clouded. He speaks about not seeing himself live like this for very long. Break and frighten my heart. This is just not my husband. I feel helpless; I just want to help him feel better and get his life back on track. He has been off of work for a short while in order to get therapy, but I don't think it is helping very much.
I need your help - HE needs your help - if you have any ideas or suggestions. At the very least, which is truly probably the very most, please pray for him. Nobody should suffer like this, nobody. It's horrific.
Thanks so much in advance for your help and prayers. You girls are the best.
Hugs and love -
Nini
Farmgirl Sister #1974
www.papercraftingwithnini.ctmh.com
God gave us two hands... one to help ourselves, and one to help others!
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25 L A T E S T R E P L I E S (Newest First) |
Cozynana |
Posted - Oct 30 2016 : 12:10:49 PM Nini, So sorry your hubby is not in the clear yet. You live in Lyme country. If you have not been to a Literate Lyme Disease Medical Doctor. Please get him into one. But, also I wanted to share a Dr I watch on YouTube.com that addresses the brain and Spect Scans. He has a bit of a personal introduction and then gets into his brain observations. He has a couple on YouTube.com this is just one of them https://www.youtube.com/watch?v=FTtKpBGjxd8 It may be worth your while to watch them. I think he even talks about dementia in his videos and has helped people with the issues. Also watch Dr Richard Horowitz's YouTube.com clips and see if any of his info rings true for your hubby. Another think you may be able to do is get an appointment with Dr Bob Miller, he is a naturopath in Pa and did my genetic testing. He is a pioneer in the field of genetic issues and very cheap compared to others I have used. Since you are in PA this may be possible for you. I love the guy, very nice and concerned about patients. He has a dietician I use also. I do all of mine on the phone and blood tests are drawn at my local lab that he orders. You have nothing to lose and everything to gain. Please email with questions if you have any. Just trying to help, been through the chronic illness |
Ninibini |
Posted - Oct 08 2016 : 08:15:12 AM Hi girls -
Just a little update: My hubby has been having botox injections for his headaches every three months now for about a year. At first they did nothing but cause him soreness in the injection sites, and seemingly worse headaches, but I think it was the third round that he started to actually get relief. They worked for a little while but his headaches are slowly increasing again. After his last injection, he got another mind-blowing screamer about a week and one-half later. It slowly subsided, and now he is getting intermittent light-to-moderate headaches again. The doctor said that all they can do is continue with the injections every three months, so we are going to proceed and see how he does. Unfortunately, he has been diagnosed with frontal lobe dementia, so my concern is that as the disease progresses his headaches may worsen. Thankfully, though, he has two great neurologists covering both issues. I am sure they will do everything they can to help him as time goes on.
Thank you for being there and for all of your prayers. Annika, I'm so sorry I didn't respond last fall when you posted. As you can imagine, life has been a bit of a whirlwind. Please know I am very grateful for you, for your hugs and for your prayers!
Hugs -
Nini
Farmgirl Sister #1974
God gave us two hands... one to help ourselves, and one to help others!
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Annika |
Posted - Nov 04 2015 : 9:58:08 PM I'm trying to catch up on all of this. I'm so sorry that your poor husband is suffering like this. It really does sound lymes-like in a lot of ways. I've had migraines since I was a girl and am lucky that triptans usually take care of them nicely. What he (and you) are going through sounds like a nightmare. I'm afraid for both of you and hope that answers and especially, relief, is to be had very soon.
HUGS!!!!!! |
Ninibini |
Posted - Nov 04 2015 : 8:39:03 PM Hi girls - Thank you so much for your suggestions. You are all so helpful. We've done so much of that already, all without success, but please do keep the ideas coming!
Kathy - I am just SO happy they got your condition under control - especially the heart issues. They installed a pacemaker on me almost two years ago, and I am very grateful for that peace of mind! I am sure you are, too!
Here's where we are at with this:
He had the allergy tests. He is allergic to grasses and trees, especially oak trees. They started him on drops to try to build up his immune system. It's not helping his headaches, at least not yet, but even if it only helps with his allergies, that will be a blessing! They did not say anything about changing his diet, but we have done all of that already and it didn't help one bit.
The new medicine didn't work, he went back on the other prescription. He's opting to just go back for the second round of botox in two weeks. Please say a prayer for him. The first time was horrendous. I still wish he wouldn't do it, but he says he has to try. When we go to the neurologist for that procedure, we're going to see if he just wants to do the lumbar puncture, etc., himself. My hubby is just so tired of going to all these doctors. He feels he has a good rapport with the neurologist/headache specialist, so he is sticking with him. If it makes him happy, at this point, I'm not arguing.
They are also going to see if his insurance will pay for genetic testing that will somehow help identify which meds will and will not work with his system. The hope is that they will be able to find adequate medicines and avoid any more of this trial and error stuff. Wouldn't that be a blessing?
And they want to try a new type of therapy to help him with the psychiatric side of this. I have to make calls tomorrow to see what is allowed within our health plan. I can't imagine what he is going through. Something has got to give. They have to find something to help him. I won't burden you with the details, but it's getting really bad. I am extremely concerned, and have all the emergency numbers in my phone, and I have the POA, both ready to go if I need to use them. Some days I wonder if I'll ever see my husband's joy come back, if I'll ever see the real him again. I keep praying!
Life... What a thing!
Hugs -
Nini
Farmgirl Sister #1974
www.papercraftingwithnini.ctmh.com
God gave us two hands... one to help ourselves, and one to help others!
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ClaireSky |
Posted - Nov 02 2015 : 11:31:50 AM I used to suffer from migraines also. But I rarely get them anymore due to the fact that my doctor figured it out for me. She said to take away as much of it that your can of preservatives, additives, and artificial food coloring. It did the trick. Maybe that might be his problem also. Good Luck!
Julie ![](icons/icon_smile.gif) Farmgirl #399 May 2010 Farmgirl of the Month
Folks will know how large your soul is by the way you treat a dog ... Charles F. Doran |
nut4fabric |
Posted - Nov 02 2015 : 08:30:35 AM Hi Nini, Just saw this thread and wanted to mention a couple of things. First I have had daily migraines for a couple of years now and have tried every preventive that the doctors can think of. I have found that any form of soy in my diet will trigger them so I read labels like they are books to avoid the soy and I have found that it is in almost everything we eat, causing my to eliminate some things from my diet and find alternatives for others. I am currently trying MSM which is a over the counter supplement of sulpher which can be lacking in the diet. It is supposed to be good for chronic pain and in fact is recommended by a Chiropractor that I worked for. I am also using a magnesium spray , lack of magnesium can also lead to chronic pain. The advantage of a spray over a pill is it won't cause stomach upsets. Second I have very low blood pressure and always thought i was lucky until early this year when it started causing me to pass out and my heart to stop. Long story short, after a couple of admissions to the hospital and coding twice in one day a pacemaker was put in to keep my heart beating and I have to increase my salt intake and stay very hydrated to try and keep the blood pressure up. Don't see a connection between the blood pressure and head aches in my case and neither the MSM or the magnesium in affecting my heart in a bad way. Praying that you and your husband find some relief. Kathy |
marthajane |
Posted - Oct 21 2015 : 01:48:29 AM I am sorry I missed this! Please update how the poor man is doing! Look into if he has a sinus infection. Find a good emergency room because it also sounds like he needs minerals! As in an IV ASAP! And please whatever you do get that man a 6$ bottle of hawthorne berry from walmart! Take 1 every 4 hours everyday! Also to Cindy please try hawthorne berry!
HAPPINESS IS BEING A MOM |
Ruby V |
Posted - Oct 20 2015 : 11:44:17 PM I had no idea that migraines could be so painful, how scary. Have you tried acupuncture? I don't know if it works on migraines, but I've had a lot of success with it stopping other pain I've had. I hope he can find some relief soon. Thanks for sharing his story with us. It was interesting to me to learn about migraines.
Ruby ~ Sister #3597 |
prariehawk |
Posted - Oct 04 2015 : 9:37:41 PM Wow, Nini, that is scary. My normal BP is about 110/68. But it drops low for maybe a few minutes and I feel a little weird and then it's normal again. I've never had any shaking, except when I've been extremely scared or nervous. And then I'm always aware of it. I did go to the ER at the end of August (was afraid I had pneumonia) and they did an EKG. It showed I was at risk for heart failure (normal reading is 5-125 and mine was 375). I didn't have pneumonia, just very bad bronchitis and asthma. I did get an echocardiogram and a stress test. My dr. said my results were "normal" but that my heart wasn't working as efficiently as it should cause I was so sick. Still don't know why my BP drops so low. I think lots of time doctors only tell one tenth of what they know. I'm glad you have doctor you feel you can trust. Cindy
"Come by the hills to the land where fancy is free; And stand where the peaks meet the sky and the rocks reach the sea.Where the rivers run clear and the bracken is gold in the sun. and cares of tomorrow must wait till this day is done"--Loreena McKennit "In many ways, you don't just live in the country, it lives inside you"--Ellen Eilers
Visit my blog at http://www.farmerinthebelle.blogspot.com/ |
Ninibini |
Posted - Oct 04 2015 : 6:47:58 PM Amen, Cindy... That was beautiful, and so very, very true! Yes, he drinks plenty of water. Water is our beverage of choice, and I am on top of him to ensure he gets enough. That was actually one of the first things they told him to do, as well as dropping caffeine all together. Thing is, though, since he has been home, he has started drinking a cup of coffee every once in a while in the morning. Not often, but I do worry about it when he does it, because he was told not to. I choose to pick my battles, though, if you get my drift. ;) That really IS low blood pressure you have! Ohmygoodness, that's scary! Please take care of yourself - I'm very concerned about you!!! His bp is usually very low, and constantly low; but as far as I know, not THAT low! Eghads! Do you do anything else special to try to get your bp up? Until now, his doctors have all dismissed it. But I'm very happy that this doctor is addressing it! One very scary thing for me is that three or four times now during the night, when he has managed to actually catch a few zzz's (he gets anywhere from 10 to 30 minutes here and there - I truly believe it's only out of complete exhaustion!), he has gone ice cold from head to toe - it has freaked me out each time, because his breathing was so low that I couldn't hear it and I thought he had died! I woke him each time and cuddled up next to him until his body warmed up again. It was the weirdest thing. That is partly why she wants to do a sleep study after she sees him next month. He has also started having these episodes at night when his body goes stiff as a board and he trembles uncontrollably. Again, this has only happened when he has managed to sleep for a short while. Each time, the shaking was so strong that it has wakened me out of a sound sleep (and once I realized what was happening, I counted up to 7 Mississippis before it was over!), but he had no idea it was even happening! He also has had muscle spasms all over his body - we've actually sat there watching them. And last week while having a sandwich, his hand and arm were shaking worse than my grandfather's ever did (he had Parkinson's), and he was completely unaware of it until I pointed it out to him! Does ANY of this sound familiar to you? This new doctor feels that it could all be blood pressure related... And, like I said, she will be doing a lumbar puncture next month if his symptoms don't improve. I had no idea that a person's spinal fluid/pressure could fluctuate and cause problems like this (and the headaches!!!). I mean, I've heard of spinal headaches, but only in terms of a lumbar puncture. This ought to prove very interesting, to be sure. I just really hope and pray that now something will give and he will get some relief! :)
Thank you for your insight and kind words - they mean so much!
Hugs -
Nini
Farmgirl Sister #1974
www.papercraftingwithnini.ctmh.com
God gave us two hands... one to help ourselves, and one to help others!
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prariehawk |
Posted - Oct 04 2015 : 5:50:22 PM Nini--I feel so bad for what you're going through but you're right--God is always there for you. I feel bad for your hubby as well but at least he's getting some sleep--that can make such a big difference. As for his low blood pressure, my BP is sometimes very low--like 80/60 or even 57/43--and my dr. doesn't know why. It doesn't stay that low for very long and my dr. said it's important to stay hydrated as dehydration can cause low BP. With all the meds. you husband is on, he may be dehydrated and not even realize it. Coffee is, I believe, a diuretic. Does he drink enough water every day? I hope and pray he finds some relief and you find some answers for this suffering that he's going through. It must be frightening for you but I know God is with you, and him. Mercy is a powerful word. And no one is more merciful than God. Cindy
"Come by the hills to the land where fancy is free; And stand where the peaks meet the sky and the rocks reach the sea.Where the rivers run clear and the bracken is gold in the sun. and cares of tomorrow must wait till this day is done"--Loreena McKennit "In many ways, you don't just live in the country, it lives inside you"--Ellen Eilers
Visit my blog at http://www.farmerinthebelle.blogspot.com/ |
Ninibini |
Posted - Oct 04 2015 : 09:26:42 AM Hi girls - good morning!
So many wonderful thoughts. Thank you! And thank you so, so much for your prayers.
He goes to the allergist this week, I think. I am anxious to see what they find out!
I just took him to a new neurologist this past week who is now addressing his sleep issues and chronic pain in a different way. (Kem - this doctor specializes in a couple of areas, one, in particular, is Lyme.) At first she checked out all his records, tests and films and felt this surely was a psychological issue. However once she heard about all the nasty hits my husband has taken to the head and saw the flat spots on his head as a result, she changed her tune considerably. She isn't ruling out CTE yet, either. One thing she is addressing that really makes me happy is that my husband has EXTREMELY low blood pressure. After a 16 oz. cup of coffee (which would put my BP through the roof!), his blood pressure was "high" for him - 102/60!!!! She was floored at all the medications and treatments they have tried for him, and didn't feel plying him with more meds at this point was a good idea. She was very concerned about blood flow to his brain, explaining that that alone could be causing a whole host of symptoms he is having. (The pain, the headaches, the rage, the muscle ticks, the shaking, the "seizure"-like attacks he is having at night, and the way his body has gone icy cold from head to toe a few times at night - I was afraid he had died on me!) She noted one of the meds the headache specialist has him on actually constricts blood vessels, which is probably making things worse, and, with the permission of the headache specialist, he is now off of that medication. Since he has hardly been sleeping at all, she prescribed muscle relaxers to help him not only sleep but also with his raging. She said if he can calm down and get some sleep, that may be a huge help. She also recommended that he add sodium to his meals (When do you ever hear a doctor say that?) to help get his blood pressure up (I rarely use salt as a seasoning.). She also does those botox shots that he has had to which he had an adverse reaction (he's still suffering a month later!). She said that she doesn't feel he needs to have another round of shots since they caused him so much pain. She said that his specialist is right, though. Sometimes they don't provide relief until the second round. She said it's ultimately up to him what he does, and defers to what my husband wants to do along with the recommendation of his headache specialist. It's ultimately up to him. If I had my way, though, he wouldn't have them. She advised him to continue seeing the psychiatrist, the private counselor and the headache specialist, and next month when he goes back, if the headaches and other symptoms aren't showing improvement, she is going to schedule him for a lumbar puncture. She said it is extremely important to keep the fluid pressure in your spine at a certain level, and if his is too low or too high, that also could be contributing to the problem. (God help him, I've had a lumbar puncture. They are no fun. I got beached brain and had to have a epidural blood patch to resolve the issue. If you don't know what that is, please look it up. It was a godsend, believe me.) ANYHOW, she will also be scheduling him for a sleep test, but not until we see how he does on the muscle relaxers. She also recommended a couple of supplements to help. I liked her - a lot. She made a lot of sense with her assessments and explanations. We will see how it goes.
Patsy, yes... You are SO right! He IS at risk. He gets regular counseling, and sees a psychiatrist who is very concerned at what he's going through. The psychiatric condition he has makes him dangerous to himself and possibly others. (Yeah...Yay...) The doctors all say this condition is exacerbated by these constant migraines, and that the condition is exacerbating the headaches. A vicious cycle to be sure. All of the meds they have tried have done nothing but make him so much worse. This is just not my husband. My husband is a sweet, loving, thoughtful, caring, humorous ball of laughter. Life was always fun, always full of love. There were times he was "off" but never like this. When this condition surfaced a couple of years back, our lives were severely altered, and it has only gotten worse with time. He is suffering so much. I hardly ever see the man I knew in there any more. Even a glimpse of him feels like Christmas. "Mercy" is the word I hear in my heart for him. But, believe me, it's tough. There are many days where I just want to run screaming into the night because he is very, very difficult to live with. He is ill. Very ill. Knowing that, however, does not make living with him easier at all. I just have to pull myself up at the bootstraps, put on the full armor of God, pray, put my arm around him, grab one arm of his cross and help him move forward. This is the hardest thing I've ever had to do. Ever. But it cannot possibly compare to what he is going through. This is one of those times that the marriage vows are tested and I just have to press into God as the third strand in our chord, you know? God really does help us all through this. He makes me strong, and sends me exactly what I need when I need it - without me even having to ask. He is amazingly wonderful!
Thankfully, after a couple of days on the muscle relaxers he is getting some sleep. He is snoring so loudly that I can't sleep! LOL! But that's okay - he is so exhausted and definitely needs it. He's going through withdrawal from the med they have removed, so he's a bit of a "joy" ;) ;| ;\ to live with, to put it lightly; but we've been dealing with it for so long, it's really nothing new. We're just taking it one day at a time. New day, new sunrise, new hope on the horizon! :)
Oops! 'Gotta run - sorry! Life is calling!
Love and hugs and so many thanks to you, girls!
Nini
Farmgirl Sister #1974
www.papercraftingwithnini.ctmh.com
God gave us two hands... one to help ourselves, and one to help others!
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forgetmenot |
Posted - Oct 04 2015 : 08:21:11 AM All I can offer Nini and DH are prayers. I am so sorry for his and your pain. So, I will say daily prayers for both of you.
Farmgirl sister #3926
"Courage is not the absence of fear, but the belief that something is more important than fear." Ambrose Red Moon |
Patsy |
Posted - Oct 04 2015 : 06:44:03 AM Nini, I cannot help with the physical problem of migraines but I want to address the psychological changes you are seeing in him. Chronic pain and lack of sleep can alter our brain functions over time and can cause mood changes and increase depression. If he isn't seeing someone to help with this, I encourage you to think about it. I work at our Human Resource Center and have talked to folks with chronic pain and sleep issues. The stress of this can actually worsen pain and I am concerned with depression and with being bi-polar, he is at risk. Please ask him to go and just talk with someone outside of his family and friends. He will say things to them that he won't say to you. It might help with things all around. Hang in there and we pray that God steps in and points the way for the doctors to find out what is wrong. God bless.
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Melina |
Posted - Oct 02 2015 : 09:17:20 AM I suffered for many years with migraines, a couple of times a week. Then I discovered I was highly sensitive to egg yolks. Since giving up my morning over-easies, I've never suffered with another. I can eat whites til the cows come home, but no yolks. No estrogen, either. It's worth a try. Good luck to your hubby.
The morning breeze has secrets to tell you. Do not go back to sleep. Rumi |
Cozynana |
Posted - Sep 21 2015 : 7:58:26 PM Nini, are you on Facebook? Maybe we could private message and keep a dialog going off and on if needed. Call me anytime, I mean anytime if you have a chance. I get up around 5 a.m. central standard time. I don't work so can make it work anytime. Set a time and I will be available. I will try to find the Literate Lyme disease docs in Penn. Are you close to any other states? Please let me help you confirm or exclude Lyme. It is absolutely nothing to play around with. |
Ninibini |
Posted - Sep 21 2015 : 1:55:09 PM Hi girls - sorry it took so long to get back to you.
Sherone - Thank you for the suggestion! He hasn't been tested yet, but is actually waiting for an appointment to do so as soon as possible. I am hoping that will give us something to work with! :)
Kem - I will definitely mention this to his doctors, and yes, I would like to find a doctor to have him tested. He has been to the ER several times, and each time they give him meds that make things so much worse. And the rage... I cannot even begin to describe it. It's almost unbearable to be around. I never knew that the headaches and rage could come from Lyme. I don't know that he has ever been exposed, but that doesn't mean he hasn't. It certainly can't hurt to have him checked! I will try to call first chance I get. We have been so busy with doctors, appointments, phone calls with insurances, etc. It's like this never-ending cycle. And it's very difficult to be on the phone when he's here. But I will definitely try to call soon - or, at the very least email you. Thank you so much for the offer!
Hugs -
Nini
Farmgirl Sister #1974
www.papercraftingwithnini.ctmh.com
God gave us two hands... one to help ourselves, and one to help others!
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Cozynana |
Posted - Sep 16 2015 : 4:35:39 PM Nini, You need to have him tested for Lyme disease, bartonella, and babesia. The last two are all related to Lyme. I can so relate to his symptoms. I use to have migranes that sent me to the ER. I had Lyme rage and couldn't think straight. I isolated and felt so ill. The CDC (Center of Disease Control) state that 300,000 people are contracting Lyme a year in the U.S. I see you are in the state of Penn. You are right in the middle of Lyme country. I can get you names of Lyme Drs to go to if you are interested. DO NOT go to a regular doctor to get a diagnosis of Lyme. I made that mistake and it took 47 doctors to get diagnosed. Again, you are describing me to a tee. Please give me a call (785-475-3395) to discuss this if you are interested/ |
sherone_13 |
Posted - Sep 15 2015 : 10:16:23 AM Have they tested him for food allergies?
Sherone
Farmgirl Sister #1682
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Women are angels. When someone breaks our wings, we just jump on our broomsticks and fly! We are flexible that way! |
Ninibini |
Posted - Sep 12 2015 : 10:33:33 AM Oh, gosh... Girls... Thank you so much for all of this input.
Annie: I was so taken back by your response about the allergies. I have been telling him I wanted to have him tested for such a long time now. When I read your post, it really rang true for him as well; especially concerning your allergies to the medicines and anything having to do with grass. SO interesting!
Cindy: I actually found out last week that our physician's office is now offering integrated medicine. He is going to be meeting with them in a couple of weeks once they are settled in and ready to go. They will be doing allergy testing as well as other types of therapy and treatments once he has a full evaluation. In the meantime, I've been coordinating new care for him under our new insurance as well. Who knows? Maybe fresh new perspectives will be a blessing in disguise. Right now, though, he is a raging, miserable, messy ball of chronic, debilitating pain. I just want to make him better!
Sherone: He has done Toprol, it only exacerbated the pain and other issues he is having. And the Imitrex doesn't even take the edge off. It's insane. But thank you so much for your insight! I really appreciate it! :)
Hugs -
Nini
Farmgirl Sister #1974
www.papercraftingwithnini.ctmh.com
God gave us two hands... one to help ourselves, and one to help others!
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AnnieinIdaho |
Posted - Sep 08 2015 : 08:55:20 AM Hi Diana, I am in northern Idaho on the outskirts of Post Falls toward Spirit Lake. Have a good day! Annie
"The turnings of life seldom show a sign-post; or rather, though the sign is always there, it is usually placed some distance back, like the notices that give warning of a bad hill or a level railway-crossing." Edith Wharton, 1913 from 'The Custom of the Country'. |
sherone_13 |
Posted - Sep 08 2015 : 08:07:51 AM My doctor put me on a low dose of Toprol (a blood pressure medicine) That in addition to Imitrex have been very successful in treating my chronic migraines.
Sherone
Farmgirl Sister #1682
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Women are angels. When someone breaks our wings, we just jump on our broomsticks and fly! We are flexible that way! |
gramadinah |
Posted - Sep 08 2015 : 07:16:53 AM Annie first where is Idaho are you? Second great information.
Diana
Farmgirl Sister #273 |
AnnieinIdaho |
Posted - Sep 07 2015 : 8:52:32 PM Oh, forgot to mention a big one! I am allergic to iron dioxide which is in many Rx's. Latex is also in many foods such as bananas, kiwi, and avocados. I know, I know...believe me...my list is pages long, so many delicious foods but the headaches were so horrific it makes it somewhat easier to go without. Take care sisters, Annie
"The turnings of life seldom show a sign-post; or rather, though the sign is always there, it is usually placed some distance back, like the notices that give warning of a bad hill or a level railway-crossing." Edith Wharton, 1913 from 'The Custom of the Country'. |
AnnieinIdaho |
Posted - Sep 07 2015 : 8:49:43 PM Hi Ninibini, I used to have migraines continuously also. (not to the level you have described, but debilitating). I finally got the skin prick allergy tests done with over 100 scratch tests on my back. It turned out I was allergic to most plant foods. Plant foods are part of a larger plant family i.e. cantaloupe is in the ragweed family. Many plant foods are in differing tree groups. My body does not differentiate between the proteins in the environment (ragweed field) and eating cantaloupe. (This is only one example but you get the idea). I stopped eating all foods I was allergic to. I started taking Ketorolac a super anti-inflammatory and a Benadryl per my M.D.'s instruction. Now my migraines are maybe one every 3 months. It is such a relief. I never responded to any of the migraine meds, or the anti-seizure or meds used for altitude sickness. This condition is known as Oral Allergy Syndrome. I have no idea if it is part of your husband's underlying cause. But I wanted you to be aware of OAS. If he hasn't done so yet, it may be worth skin testing. I didn't have the gluten issues show up in blood testing, but with skin prick it showed I was allergic to all kinds of grass so cannot eat rye, barley, oats and since quinoa is related to tumbleweed that one is ruled out too since I am allergic to tumbleweed. I eat mostly an animal based diet and if careful to eat good meats and dairy, my cholesterol, blood pressure, etc. are in a very healthy range. I am unable to take vitamins because they are derived from so many things I am allergic to. I can eat a few veggies like cabbage, green beans, peas and a few fruits like blueberries. Also, make sure your husband does not have an underlying allergy to aspirin (salicylates). Salicylates are in many fruits and vegetables and even in honey. I react terribly to salicylates. There are also some molds I am allergic too, hence no cheese. But some molds are prevalent in the air during certain seasons and there is one in particular that causes a whopper of a headache. He can be tested for mold allergies too. I too went to a headache clinic and most tests, scans, MRI's came back negative. It took 7 years to be diagnosed. Thank goodness one M.D. had a best friend who was an allergist and they were talking. His friend asked him to refer me that he suspected my severe continuous migraines were allergen based and it extends into multiple chemical sensitivities to synthetic based personal care products or even herbs. I cannot eat parsley, cilantro, celery, carrots, etc. So if you are allergic to poppy seeds, you may be allergic to morphine. I always ate whole foods cooking from scratch for decades, but was poisoning myself with true healthy foods. But my 25 headaches a month have subsided immensely, so I eat animal based diet. I always wondered why I felt weak and dizzy after a good bowl of oatmeal, and energetic after ice cream. Best to you and your husband! Annie
"The turnings of life seldom show a sign-post; or rather, though the sign is always there, it is usually placed some distance back, like the notices that give warning of a bad hill or a level railway-crossing." Edith Wharton, 1913 from 'The Custom of the Country'. |
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