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MattiesMomParticipant
Dr. Diana,
Thanks for reading through my “adjusting to Diamox” thread. I hardly have any side effects, not feeling super sleepy and loopy or anything anymore. I have increased the dosage quite a bit, still tinkering but find most relief at 125 mg twice daily then 250mg at night. I do have problems when it wears off though, which I really try to avoid because I get very grouchy, panicky, and my back of the head and neck hurt, etc. I am taking the Z/Z but not on Cromolyn Sodium yet. I am hoping that my POTS cardiologist will let me try it, I think I will try to get the nerve to call and ask him tomorrow. He had suggested adding beta blockers next, but I really do think I fit the Mast cell disorder pretty perfectly, and believe it explains a ton… going back to being allergic to everything as a kid (287 of 300 skin pricks on my back), then developing large painful lymph nodes everywhere in my body that have never gone away since I started developing them in large qualities in 2003 (biopsied many years ago- reactive lymph nodes), tons of random allergic things that happen to me, wheezy wet breathing, interstitial cystitis, getting so incredibly sick with a long term migraine from MRI contrast, just way too many things to list. I have read that beta blockers can cause mast cells to degranulate, and I can just see that turning into a horrible cycle. My newer primary care doctor gave me one months worth of xanax while we trying to figure out what was going on (before I figured out myself that I had POTS and found a POTS cardiologist to confirm it). I made that xanax last a month and a half, but now that doctor won’t refill it. :/ My POTS cardiologist doesn’t prescribe xanax because he explained that it isn’t true anxiety… it’s a haywire autonomic thing. I was just using it to help when I have a freak out attack, and to help me sleep. I take Magnesium Citrate at night.
On a lighter note-The hope you brought up… That is a great to know that a patient has improved so much! 🙂 And thanks for making me laugh about your side effects and explaining the way our brains may react to losing the built up pressure.
MattiesMomParticipantAnd regarding the fainting or near fainting when laying down, did you already read the thread- “Do you feel sick when you lie flat on your back, or have you ever felt “paralyzed”?” on this forum?
A soft neck collar brace may be helpful? (I didn’t like it myself, but most people here do.) Instead, I roll a towel and use that at the very top of my cervical spine. I never was able to lay on my sides before, and just couldn’t figure out why- it’s like my shoulders, neck, everything collapses… But now I will not lay down without a rolled towel to support my upper neck. That suggestion (found somewhere here on pretty ill) changed my ability to lay down. I had to figure out exactly where to place the towel for support, but it helps on my side, my back when elevated to watch TV. etc.
MattiesMomParticipantCourtney, There are a couple different types of headaches that I experience. Please go to the videos section at the top of this page and watch the video titled “External Communicating Hydrocephalus”… that may give you somewhere to start.
MattiesMomParticipant@Tonkadu, I woke up today thinking about your wife. I hope she finds the improvement she needs. Please go to the top of this page and look at the videos section, Then watch the video with the title “External Communicating Hydrocephalus”… it is the like the second or third video down. It may help you figure some things out.
(And ignore the spam posted on this thread. Sigh.)
MattiesMomParticipantI am no expert, (brand new Diamox user myself) but from what I have heard/ learned… the florinef is counterproductive to the Diamox. The florinef may be increasing fluid pressure, which you are trying to reduce with the Diamox. Not sure about the propranolol, as I have no experience with it. I decided against florinef for that reason, I did not want to increase pressure. I had a hard time adjusting to Diamox for the first few days (had wacky side effects), but now I do not have side effects, besides numbness/ tingling in my extremities at times and perhaps an increase in light sensitivity. But for me there is reduction in the back of the head ache and upper neck pain, and increased appetite, and it works as an anti-nausea for me, and helps with my mood swings/ irritability. I take 1 1/2 to 2 sodium bicarbonate pills (650mg each from the pharmacist with out an RX) with each dose and I will take an additional 1-2 sodium bicarb pills through out the day. I had to fiddle with the dosage and now my head tells me when I am due. I try to take it at really regular intervals (I take 4 times a day). I had to tinker around with the dosage until I found what was working best. Again, I am no expert. Others here have said that you should have blood levels watched while adjusting to Diamox.
MattiesMomParticipantDo you know if that ocular fundus study still recruiting?
MattiesMomParticipantSince I don’t see any other replies, I will chime in. Yes, there are headaches with POTS.
MattiesMomParticipantOurfulhouse,
Thank you once again! I did read your comments yesterday, but my migraine was so severe, looking at the computer screen hurt, so I took the day off of the computer. I decided to take 1/2 doses of Diamox with some Sodium Bicarb pills my hubby got from the pharmacist -650mg tabs similar to the link. (The new link works when copied and pasted into browser, Thx). I could actually feel the Diamox wearing off every couple hours, as the head neck pain is different than the other migraine pain. I am charting now in a journal. I think you may have been right about the allergic reaction triggering the migraine. I spent the day in my room quiet, and dark. Today I was relieved to wake up without the awful migraine. Today was one of the most functional days I have had in quite a while. 🙂 I feel that I am reading my body better and figuring out the Diamox dosage better and think the sodium bicarb tabs may be helping more than the nasty baking soda water. 🙂
No, I do not have an epi-pen, but after what happened with the toothpaste (and a handful of similar experiences), I think you are right.
My cardiologist wants to add low dose (compounded to be lower dose) beta blockers. Have you tried beta blockers, or have you heard anything good/ bad about treating EDS POTS patients with beta blockers?
I am curious about the anti-depressants as well, as he also mentioned SSRIs as a possibility. I have tried SSRIs in the past (when doctors thought I simply had chronic fatigue/ fibromyalgia, and migraines…before I developed POTS and before we knew about Ehlers-Danlos)… and I had bad reactions and a hard time trying to adjust to each one we tried before giving up. (Though I think I had the best run with Welllbutrin for a little while there.)
Having somewhere to go to speak with people who understand means a lot to me too. I appreciate the support.
MattiesMomParticipantOurfullhouse,
Thanks again! You are so helpful to me right now. I really appreciate having someone to talk to about this. So basically, should I ask my doctor to just watch how acidic / alkaline I am?
I actually came on here today because I came across a BIG bump in the road and I am pretty scared. I had increased my evening dose to 250mg Diamox, and that was great for a couple nights now… But last night, when brushing my teeth, I suddenly developed an allergic reaction to the toothpaste I have been using for a while (a natural toothpaste that is made with bee propolis, so apparently I decided to develop an allergic reaction to bees). My throat was closing and I couldn’t stop gagging and coughing for a while. I took a really high dose of natural allergy meds (with bromelain, quecertin, stinging nettles) and it mostly resolved within a half hour or so. (I am already taking 2 zyrtec & zantac am and pm). By bedtime, my headache was bad. I took the 250mg Diamox and hoped the headache would be better when I woke up. I ended up waking up during the night in misery with the headache, drank tons of water, went back to sleep. This morning, I have a full blown migraine. But it seems different than the normal CSF back of the head and down the neck headache. I was feeling it at the top of my skull, but now it feels like I got hit on the back top of my head with a bat. I am so light and noise sensitive and nauseous. I hung a blanket over my window, I took a vicodin, and it has made a little dent in the pain… but I am scared to take Diamox. Not sure why it didn’t help the headache last night. I wonder if I take too much, will it cause a headache from removing too much CSF? Or maybe my allergic reaction last night has something to do with it? I know you can’t answer these questions, but it would be a comfort to hear someone’s opinion.
Side note, I copied and pasted the link early last night, and still that amazon link wouldn’t work.
MattiesMomParticipantThank you for the advice. I did have my blood drawn at the ER about 1 1/2 months ago, they checked my electrolytes and a few other things. I know I took home a copy, I’ll have to look around to see if it may be helpful. I guess I can call and ask my cardiologist to order the bloodwork. How often do you have it checked?
Hmm… that link to the sodium bicarb pills is not working. Will you retry or tell me the brand and where you purchase them?
I really appreciate your help!
MattiesMomParticipantOK, so my cardiologist gave me Diamox, and I didn’t even bring up anti-nausea meds because he wants to try one drug at a time… and the Diamox is an excellent anti-nausea medication for me. It gave me back my appetite! Still adjusting to other side effects, but I am enjoying the nausea relief and temporary headache relief.
MattiesMomParticipantOurfullhouse, Thank you for the reply. I have increased slowly as the side effects have tamed down significantly, but it still makes me VERY tired. Night before last, I took full 125mg pill before bed, was SO tired upon waking, but was amazed by the lack of headache and nausea when I first woke up. I had to be functional enough to pick up my daughter from school, help her with homework, do things around the house, so I took 62.5mg 3 times during the day, but feel breakthrough headaches and POTS symptoms at times. Last night I got brave and took 250mg before bed. I woke (after forcing myself out of bed) to no headache and had mental clarity, no nausea. I am still extremely light sensitive, and having breakthrough head and neck aches. I know I need to figure out the proper dose still. I have been drinking LOTS of baking soda in water. I do not have anyone knowledgable to order blood panels at this time. I do have pH strips and have been testing my saliva to be sure I do not get too acidic.
My “POTS knowledgable” cardiologist has never tried Diamox with any of his POTS patients, but was willing to allow me to try it. He gave me a 3 month RX of 125mg twice daily, and told me I could play around with the dosage. He wants me to report back to him in 2 weeks.
I tend to react to many prescription medications, in unexpected ways, so I guess this may just me adjusting to the meds? I do still have very numb hands on it (at times), and increased light sensitivity, but I had light sensitivity before starting on it, just seems even worse now. I had vision issues on/off before starting it, but strain even more now to try to read these threads on computer screen. My giggly delirious thing seems to have passed. I still have increased appetite which is AWESOME!
I think you are right, I need to take it at a more structured/ scheduled times. Today, I will start a diary of symptoms and times, and try to be consistent when I start feeling it is helping the most. Also, I think I will ask the pharmacist for Sodium Bicarb pills when I am there next time.
Thanks again for feedback!
MattiesMomParticipantI am brand new to all of this, so surely I am not the one to give answers (I have been diagnosed with POTS, my sister and niece were diagnosed with HEDS, and I am beyond sure my daughter and myself have HEDS as well, we go to the geneticist April 16th, and I have figured out there seems to be MCAD as well, self treating so far)… But from reading above, are you on Diamox yet? And my second question, could your chiari actually be external communicating hydrocephalus pushing your brain downwards- causing the chiari? Personally, I have been having a hard time adjusting to Diamox, brand new- on day 3… But yesterday, after watching the newest video about external communicating hydrocephalus, I got brave and took a whole 125mg of Diamox last night (it makes me very sleepy and loopy)… and once I forced myself out of bed this morning, was amazed at the lack of headache and nausea and mental clarity, short lived though, because I have to pick my daughter up from school and haven’t adjusted to the side effects of Diamox so can’t take the proper dose and function. (I have not had a recent brain scan of any type, and I do not have a chiari malformation diagnosis). But in that recent video, Dr. Diana says that florinef made her worse when she was initially put on it for her POTS. Just my thoughts and questions, and sorry I am not very knowledgable. Hopefully someone with more knowledge will chime in.
P.S. When my doctors still had no clue what was going on with me, my naturopath checked my hormones that were really wacky. She experimented with me on bio-identical hormone replacement and my symptoms were getting worse. For now, I am staying off all hormone treatments.
MattiesMomParticipantOkay, so my husband left work to pick my daughter up from school, since I was feeling loopy and dizzy and my headache came back. So I decided to take another 62.5mg to see if it helped the headache and it did. Reduced it pretty significantly. But again, I am just too loopy and tired to leave the house. It helps some things, but it’s like I am trading some POTS symptoms, for wacky side effects. 🙁
April 4, 2012 at 2:36 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #1939MattiesMomParticipantOuch, ME! I tried a soft cervical collar, but could not find a way to wear it with out feeling like I am being suffocated (even though I wear it very loose). I did read a suggestion somewhere (I think it was from DR. Diana) to sleep with a towel rolled under my the neck, rather than a pillow. I have been doing this ever since I read it, and now I can’t stand to lay down without that support. (I like to place a soft ice pack on the towel to ice my neck). I also feel that my head is too heavy for my neck, and often use my hands to hold up my head.
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