I frequently get what I call 'flu-like symptoms'. I usually get them at night, and often if I get them then my balance and vertigo will be worse in the morning when I wake up. I say flu-like symptoms, but mostly I mean body aches. That overall sick feeling - even your skin almost hurts to touch it. I haven't figured out any pattern to this except sometimes I think it gets worse if I am fighting something off. Does anyone else get this? Is there anything that helps you?
Maybe you have lupus Do you also have a rash?. Discuss with your dr.N
Rest, rest, rest and exercise, exercise, diet. It’s a fine line between not pushing yourself too much but still being active and pushing yourself. I had a lot of pain last year. when I am inactive that pain will start again and then if I push myself hard I could end up in bed for a week or more trying to recover and dealing with the pain and exhaustion can be unbearable and frightening. Now that I have had several of these episodes I am managing the balance pretty well.
I suppose it could be fatigue. Unfortunately last night I slept awful since my vertigo kicked in full swing, and I woke up with one of my migraines. Hard to get a good night's sleep when I often get vertigo. There are no meds that help... vertigo stays even when you are sleeping. It is even in my dreams and will be there when I wake up. Doctors say that there is no cure for it and they have tried anti-nausea meds. The only med that helps my vertigo is valium, but for some reason it wires me and won't let me sleep so I can't take it after 4pm.
I have been tested for Lupus, Lymes Disease, and almost everything under the sun except genetic testing for ataxia. Everything comes up negative, and of course doctors are always puzzled. My eyes and nystagmus are always changing too, never doing the same thing every time I go. When I first saw my neuro he was convinced I had a brain tumor. He was prepared to give me the worst news, and then it turned out there was no tumors at all. He was very surprised.
But I also think stress may cause it to get worse. I know the last couple weeks we have had a lot of company, and a lot going on. I am now preparing for our annual 'church' convention which lasts for five days, and I suppose that the stress from that could be triggering things. I just wish there was a fix while it was happening instead of always having to be one step behind or ahead...
I have this when I push myself too hard.. added to the stress of social paranoia, fighting fatigue just tips the scales!
On reflection, my parents used to say I was shy.. shy doesn't really come into it.. it's terror. I didn't know I had ataxia until my late 50's.
I used to fight my 'shyness' by shouting and laughing which made everyone laugh but when I recall it, I really cringe.
I also have been tested.. even treated for Lupus for a year. Other tests showed 95% NOT MS. Ataxia tests showed no known cause and my diagnosis is cerebellar ataxia.
I agree with others that the only thing we can do is to exercise, pace yourself, and allow time to nap. I find if I cant nap even when exhausted so I listen to hypnotherapy CD instead.
Caffeine helps but makes need to pass water 'urgent'. I like to just tap away on my lap top on the arm of recliner ..
Patsy x
Ive been going through this as well for a long time. Flu like symptoms n then its gone. But its more frequent.
I get the flu like symptoms; and definitely more often during the heat of the summer. I can relate to the vertigo at night and then waking with a full blown migraine as it was all to common for me before I went gluten free. Have no idea whether the GF would help you or whether you have tried it. It worked for me as I was found to have Gluten ataxia a year ago; and also Celiac disease. In hindsight, the constant inflammation (heavy head) was the perfect environment for the chronic vertigo and migraines. The one thing that works for me, aside from the GF diet, is prednisone. It clears my head and the migraines like nothing else; if only temporarily.
I have explained this to the doctor almost exactly as you did. I will tell my husband "don't touch me", The first time it happened I stayed in bed all weekend thinking I had the flu. I just kept taking Motrin to keep the aching away, but I had to take them like every 3 hours. I had a neurologist appointment,and when I told her what I had experienced over the weekend and she looked at the redness of my face and wanted to know how long that had been going on. I told her for at least the last 10 years, I always thought it was from hot flashes. She tested me for Lupus and a ton of other things. She called me the next day and told me that the only thing she could tell me was that I didn't have RA. I ESR was 126 and my vitamin D was 13 when it should have 100. She immediately put me on plaquenil and Cellcept. I had an MRI which also revealed 3 lesions on my brain stem. All of this was new since my diagnosis. Auto-immune......Cerebral Vasculitis
Wow, I'm always interested in stories like mine! I was diagnosed with Celiac Disease exactly ten years ago. I have been on a very strict gluten free diet ever since (and dairy free). My neuro has tried several times to diagnose this as Gluten Ataxia since all of the symptoms seem to fit. However, I have no evidence of any inflammation from the Celiac Disease. They even went so far as to get another biopsy to see if there was still damage being done (I had other digestive issues to look at too), and everything was VERY healthy. All of the blood tests even show that I am sticking to my diet and there is no inflammation. So that makes gluten ataxia difficult to diagnose since I'm not getting exposed to gluten which would be what causes the damage. He has thought possibly just the fact that I have an auto-immune disease that maybe my body is just 'malfunctioning' and in a constant state of inflammation... again nothing confirmed. No tests ever return positive to help with anything. Ironically I still have a lot of digestive issues. Often when my ataxia flares up, so does my digestive problems. But, so far we have found no link between diet and flare ups. I have been to an allergist, and am now even off of eggs. Still the same struggles. I wish I had more answers.
Buffalo Bill said:
I get the flu like symptoms; and definitely more often during the heat of the summer. I can relate to the vertigo at night and then waking with a full blown migraine as it was all to common for me before I went gluten free. Have no idea whether the GF would help you or whether you have tried it. It worked for me as I was found to have Gluten ataxia a year ago; and also Celiac disease. In hindsight, the constant inflammation (heavy head) was the perfect environment for the chronic vertigo and migraines. The one thing that works for me, aside from the GF diet, is prednisone. It clears my head and the migraines like nothing else; if only temporarily.
Have you tried eliminating soy from your diet? Admittedly, this is a long shot but it turns out that I get a gluten type attack when I ingest even trace amounts of soy (e.g. soy oil in Mayo, Starkist tuna pouches, most gluten free breads). I was 9 months into the GF diet before I figured it out. I was so frustrated with the seemingly random attacks when I following the GF diet so strictly. After a google search, I found that there are some like me that develop a soy allergy along with the gluten allergy. I eliminated the soy and have not had a major attack since. I too get digestive issues along with nasty headaches and migraines when I ingest gluten or soy. Specifically, my early warning that it may be something I ate is stomach cramps an hour after I eat, followed by the nasty headache, blurred vision about 4 hours after eating.
regards,
Bill
MissCake2 said:
Wow, I'm always interested in stories like mine! I was diagnosed with Celiac Disease exactly ten years ago. I have been on a very strict gluten free diet ever since (and dairy free). My neuro has tried several times to diagnose this as Gluten Ataxia since all of the symptoms seem to fit. However, I have no evidence of any inflammation from the Celiac Disease. They even went so far as to get another biopsy to see if there was still damage being done (I had other digestive issues to look at too), and everything was VERY healthy. All of the blood tests even show that I am sticking to my diet and there is no inflammation. So that makes gluten ataxia difficult to diagnose since I'm not getting exposed to gluten which would be what causes the damage. He has thought possibly just the fact that I have an auto-immune disease that maybe my body is just 'malfunctioning' and in a constant state of inflammation... again nothing confirmed. No tests ever return positive to help with anything. Ironically I still have a lot of digestive issues. Often when my ataxia flares up, so does my digestive problems. But, so far we have found no link between diet and flare ups. I have been to an allergist, and am now even off of eggs. Still the same struggles. I wish I had more answers.
Buffalo Bill said:I get the flu like symptoms; and definitely more often during the heat of the summer. I can relate to the vertigo at night and then waking with a full blown migraine as it was all to common for me before I went gluten free. Have no idea whether the GF would help you or whether you have tried it. It worked for me as I was found to have Gluten ataxia a year ago; and also Celiac disease. In hindsight, the constant inflammation (heavy head) was the perfect environment for the chronic vertigo and migraines. The one thing that works for me, aside from the GF diet, is prednisone. It clears my head and the migraines like nothing else; if only temporarily.