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Severe headaches with light-headedness.

Discussion in 'Pain and Inflammation' started by acouchy, Jun 17, 2011.

  1. acouchy

    acouchy Unwilling ME/CFS Participant Since 1998

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    Hi,

    I have been experiencing extremely severe migraine like headaches. Light-headedness, light and sound sensitivity accompany these flare-ups. These flare-ups tend to last 2-7 days and leave me house-bound and/or bed-ridden. They are a 10 on the pain scale. The best way to describe the pain is I feel like I have worst hangover but I never drank anything. Ive been experiencing these flare-ups for the past 3 years and my GP and specialist have yet to provide me with any answers or relief. My current treatment plan is to wear an eye mask, earplugs and cry till I fall asleep. Has anyone who experiences these types of flare-ups ever found out what the cause is? Has anyone ever found any relief? Thank you for listening. Any ideas or suggestions are greatly appreciated.

    :headache:
     
  2. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Hi, while you're waiting for someone with relevant experience to reply, and since you say it's like the worst hangover, I'll just suggest reading the last few posts of the alcohol intolerance poll thread:
    http://forums.phoenixrising.me/showthread.php?7984-Alcohol-Tolerance-Poll&p=186679#post186679
    as regards acetaldehyde, which is the chemical most responsible for hangover symptoms and not co-incidentally it is produced from the breakdown of histamine, which many with CFS suffer an overabundance of... i.e., hangover symptoms without alcohol.

    It might not apply to your case, but then again it can't hurt to be aware of those things :)

    Also, have you taken your blood pressure during these attacks?
     
  3. acouchy

    acouchy Unwilling ME/CFS Participant Since 1998

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    Thanks for your reply.
    The post about alcohol intolerance is very interesting. Thank you for posting the link. It is definitely not related to alcohol consumption as I rarely drink yet I have these flare-ups 2-3 times a month. They really do feel like a hangover though. Acetaldehyde is definitely something I will look into and talk to my specialist about. Thank you for mentioning it. Doing a fast Google search on it I found fruit and coffee mentioned. For the last week I have started a Paleolithic diet and have been eating a ton of fruit in an attempt to stay away from processed carbs and for the last few days I also have been having an extremely bad headache/dizziness flare-up. Maybe this is the reason for latest flare-up.

    I don't have a BP cuff to use at home during my most ill moments but once I lucked out and had a flare-up on the day of a doctors appointment and there was a 30 point difference (drop) when I stood up. I thought for sure I would get a diagnosis of POTS but nope... nothing. Mentioned it to my specialist and I don't think he even wrote it in his notes. So frustrating.
     
  4. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    wow, Paleo... Why'd you do that? My response is in the spirit of looking for similar people because I think that CFS comprises many subsets. I want to compare with my subset.

    I guess I got to Paleo from CrossFit. It held promise but to me was ultimately trendy.

    I will willfully desist from an anti-Gary Taubes rant :)

    candida?

    it's a story in itself.... but to me simply: eat sugar get gas

    essential equipment. You can get a stethoscope attached to a cuff for ~ $15 US. I was lazy and used automatics, but now do manual and think is better. Much.

    Orthostatic tachycardia is different from orthostatic hypotension. Form a group here and I'll join :)

    Or a Paleos CSFers. :) Pardon me, I've been trying to take a humor approach to endless problems, and I'm not ragging on Paleo except for the trendiness. But Paleo vis-a-vis food allergies might be a real avenue to explore. CFS to me indicates heightened allergic responses.

    And yes, I have sat down to 3/4 pound ground beef of lunch :) Bit coconut milk, c'mon. I bet you do exercise, too. You are encouraged to write back with feedback. S'il vous plait.
     
  5. Nielk

    Nielk

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    Acouchy,

    i get similar migraines constantly and they are devastating and very hard to treat. I empathize with you. I found that for some reason taking one Benadryl and three Advils helps take the edge off.

    The one drug that did prevent my migraines was Topomax. You have to take it every day and it really helped me for about a year but, then the side effects kicked in and it was too much for me to bear but, I think many people get relief with topamax for migraines. I tried everything even Botox and nothing helped.

    I wish you good luck. I don't know the reason we get it but, my doctor said it's part of having CFS for many people.

    All the best
    Nielk

    Oh I forgot -my doctor recently told me to take more magnesium as it helps with pain.
     
  6. acouchy

    acouchy Unwilling ME/CFS Participant Since 1998

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    Why Paleo?
    At a recent appointment with my specialist I mentioned that years ago (probably 7 or 8) I went on the Atkins Diet (to lose the weight I had gained from taking the totally worthless anti-depressants my GP had given me). I survived the diet for 2 weeks before I abandoned it. The strange thing was I went into some kind of remission soon after this. For 2 months I felt fantastic. People around me commented about how different I was. It was amazing. Ive never really known if it was the high protein diet that was responsible for my remission or if it was something else (like all the planets aligned or the wind changed direction). Anyways my specialist suggested if I try a higher protein diet that I should try Paleo. I had no idea it was so trendy when I decided to give a try. Well at least Im in fashion. :) Seriously though Ive lost weight and I feel healthy (at least mentally at this point in time) following this diet. It should be interesting to see if I have any improvement. 3/4 pound of beef for lunch and some coconut milk... yummy. My lunch is more like a big green salad with half a can of salmon (with green onion mixed into the salmon... the onion makes all the difference in the world) and a green tea.

    Ive been ill for 16 years with this illness. I dont totally believe that a diet change will cure all the symptoms of FM or ME/CFS but I do think it can be beneficial. Make enough beneficial changes and maybe there will be a noticeable improvement. Thats kinda how my mind is thinking these days. Food allergies may very well play a role in these illnesses. Personally, I havent found any yet. When my illness took a turn for the worse 3 years ago (this is when my headaches and lightheadness first appeared) I had been following a dairy free and gluten free diet for 2 months (I was hoping to see an improvement in my fatigue and cognitive symptoms). I have no idea why after 13 years of being ill I suddenly got way worse. I kind of suspect exercise was the cause. I was also running at that time. I had running injury after running injury. I healed and kept running. After all, my GP said exercise. I think the exercise damaged my immune system. Anyways just my thoughts on how my illness has progressed.

    Definitely have to get a BP cuff. I have been putting it off because I find that it hurts. Yup... a little wimpy of me.
     
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Yes, I think diet can help some also. I have been trying to eat more organics and less processed, I also eat more protein and fewer carbs. I tried the Atkins years ago before I had a diagnosis, I think I felt a little better while on it, but not sure if that lasted, cannot recall if I strayed off the diet or if the diet just didn't help much with the sympotms after a while.

    Could you go see Dr Hyde? I believe he is in Canada? Perhaps not close enough to you though?

    I had a major flare up about 2 years ago. I started LDN, Vitamin D in a large and increasing dose (did blood tests periodically). I found for me that my results went up about 10 with every 1,000 IUs. I also started meditation and eventually some gentle yoga. I have done a few other supplements along the way. I am doing even more magnesium now. I found out I had obstructive sleep apnea, and a machine has helped with that.

    I have been getting trigger point injections and massages.

    My recovery has been a slow progression to better health and less pain!

    Hope you find some help!

    GG

    PS Yeah, I cut back on exercise a lot, put on some pounds but I am getting back on my bike now for short rides, so hopefully I can lose some excess weight!
     
  8. taniaaust1

    taniaaust1 Senior Member

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    im thinking that these headaches symptoms may be ME/CFS crashes as they sound like a quite typical crash, from possibly doing too much. The activity stuff is often accumalative.

    eg if my activity level is only JUST over what is best for me (being just over it isnt really noticable short term) .. it can take up to 3 weeks for me to feel the effects of that level and will result in a sudden crash which can leave me in bed for the time you say.

    This could mean you need to slightly cut back on your regular activity level more.

    ps.. also be aware crashes may come after a period of more intense energy but may take up to 48 hrs to hit
     
  9. acouchy

    acouchy Unwilling ME/CFS Participant Since 1998

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    Thank you for your response. I checked out the Benadryl in the pharmacy... there are several. Which one do you use? Topomax is definitely something I will ask my doctor about. Thank you for magnesium for pain advice. I definitely will start taking some. :)
     
  10. Nielk

    Nielk

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    I didn't realize there were different Benadryls. It's really an over the counter anti histamine. I'm not sure why it works for me. I have a feeling that it has to do with the facts that I suffer from all kinds of allergies.

    Hope you find something to help you.

    Nielk
     
  11. TinyT

    TinyT Senior Member

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    Yep orthostatic HYPOtension is different to POTS but just as debilitating. Do you mean a 30point drop in your systolic blood pressure (top number).

    Orthostatic hypotension is usually more than a 20/10 mmHg drop (with associated symptoms obviously).

    Does drinking more fluids/water help? have you tried rehydration mixes (lots of salt & electrolytes).

    I have POTS/dysautonomia and get bad headaches when my dysautonomia is worse. You could be prone to migraines and add orthostatic intolerance and it makes you feel awful.

    I get migraine-like headaches about once a month or so. The only thing that helps is taking some strong painkiller (usually paracetamol + codeine) having something to eat and going to sleep. Do you have pain meds for your migraines? Taking something might help to ward off an attack or shorten the duration.
     
  12. kaffiend

    kaffiend Senior Member

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    I had to make radical changes to my diet to stop "staring episodes", headaches and dizziness. I became extremely sensitive to phenols, polyphenols and salicytes. Virtually every plant has polyphenolic compounds and they're typically helpful in most people due to their antioxidant activity. The only thing that has helped me is avoiding most grains and vegetables, along with using a digestive enzyme called xylanase every time I eat. It's available as a supplement called No Fenol from Houston Enzymes. I can eat some greens, celery, brown rice, quinoa. Black pepper is the only "spice" I can eat. Organic and home grown vegetables made no difference; it's the polyphenolic compounds intrinsic to vegetables themselves that cause problems for me.
     
  13. Nielk

    Nielk

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    How did you realize what you were sensitive to. Did you do any specialized testing or did you just come to the realization yourself by trial and error?
     
  14. kaffiend

    kaffiend Senior Member

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    It was challenging. I noticed immediate effects of some foods, particularly fruits and fructose. If you get an upset stomach from eating a pear, your probably fructose intolerant. I ended up logging every ingredient from every meal in an Excel spreadsheet and noting symptoms throughout the day. I rate symptoms between 1-7 and graph them across time. Some pop out and can be related to activities or foods eaten that day, or the previous. Wheat gives me severe brain fog and most nightshade family vegetables cause pressure between my eyes and I zone out/stare at things. Those are probably absence seizures but I never had an EEG to confirm it. Blood tests for IgG immune globulins are available and that's probably the best way to go if you can pay for it or have insurance that will. These sensitivities are different from regular food allergies, which are IgE type immune reactions (i.e., shellfish or peanuts for some people).

    Putting myself into ketosis is the only way I can think clearly for any period of time.
     
  15. Nielk

    Nielk

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    Thanks for your reply. I guess there is an advantage of having an immediate reaction s0 you can attribute it to the offensive food.
    I know I have problems with dairy so I have been dairy free for years. I have been told by alternative therapists to stay away from Gluten based on the fact that I had Crohn's for many years. I have stayed away from gluten for almost a year but, don't feel different. Proteins in general feels more energizing. I have constant allergy symptoms. I know that most of these are from pollen but I'm sure there are some foods that I don't know about that are I'm sensitive to.
     
  16. taniaaust1

    taniaaust1 Senior Member

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    I too used to feel better with more protein in my diet. It turned out there was a reason for that. Protein was making me feel better due to it turned out I had a problem with high insulin levels. Protein helps to balance insulin and helps those with insulin issues.

    Seriously think about getting a 2 hr glucose tolerance test with the insulin levels included seeing you have this sign which can be indicating hyperinsulinemia. Note.. insulin issues may give one headaches and other symptoms
    (the carbs in one cup of cooked rice are enough to give me an insulin headache.. i only discovered a few days ago that some of my headaches are being caused by my insulin issue too, I'd been blaming other things for many of my headaches).
     
  17. glenp

    glenp "and this too shall pass"

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    I have found that the vaso restrictors such as maxalt and frova really help me

    glen
     
  18. acouchy

    acouchy Unwilling ME/CFS Participant Since 1998

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    TinyT

    "Yep orthostatic HYPOtension is different to POTS but just as debilitating. Do you mean a 30point drop in your systolic blood pressure (top number).

    Orthostatic hypotension is usually more than a 20/10 mmHg drop (with associated symptoms obviously).

    Does drinking more fluids/water help? have you tried rehydration mixes (lots of salt & electrolytes).

    I have POTS/dysautonomia and get bad headaches when my dysautonomia is worse. You could be prone to migraines and add orthostatic intolerance and it makes you feel awful.

    I get migraine-like headaches about once a month or so. The only thing that helps is taking some strong painkiller (usually paracetamol + codeine) having something to eat and going to sleep. Do you have pain meds for your migraines? Taking something might help to ward off an attack or shorten the duration."

    -----------------------------------------------

    Thank you for your response. :)

    My doctor recorded my blood pressure when lying down as 158/90 and when standing my bp was 130/85. So it was a 28/5 drop.

    Out of absolute desperation I have taken some Nuun (it is a electrolyte replacement that my boyfriend uses for his triathlon training). Unfortunately it doesn't seem to help.

    I am definitely prone to migraines. I had my first one 5 years before I became ill with this illness. It is very strange. Since these headache/lightheadedness spells began 3 years ago... I don't experience just the migraines anymore. Now they happen with the lightheadedness and pain at the back of my head. My GP seems to think they might be tension headaches because the back of my head is sore but yet they are still are on one side my head and behind one eye.

    Painkillers? What are those? I have never been offered anything by any doctor for pain. Apparently being a 9 out of 10 on the pain scale for 20 days of the month is quite acceptable. :(
     
  19. acouchy

    acouchy Unwilling ME/CFS Participant Since 1998

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    Thank you for your response. :)
    Interesting. I will definitely add this to my list of things to try.
    Staying away from fructose might be challenging.
     
  20. acouchy

    acouchy Unwilling ME/CFS Participant Since 1998

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    Last month I went on a very strict Paleo diet. I didn't notice any change with lightheadedness, headaches, muscle pain, fatigue or cognitive symptoms that I was really hoping for. Instead I lost 13 pounds and my intestinal tract feels great. My stomach is flat and I have so much less bloating, gas and cramps. It is absolutely amazing. The Paleo diet has helped my IBS. This month I spurged and had some dairy. Yup... I am lactose intolerant. But the real shocker was having grains again. After having one meal with grains I gained 3 lbs and all the bloating, gas and cramps came back. I will never go back to eating that many grains again. I have become a believer. A few years ago I also tried a gluten and dairy free diet for several months and there was no change in my IBS either. I wonder if Paleo would help with Crohn's. The Paleo diet is supposed to reduce inflammation.

    Also want to add that my boyfriend was incredibly supportive of my decision to give the Paleo diet a try and went on the diet with me. He is the complete opposite of me (extremely healthy) and he experienced the same thing. He lost 15 pounds. He also said that he will never go back to eating as much grains as before. He was shocked at the intestinal tract difference. He said that he had no idea how bad things were until it was better. :)
     

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