Katybug

Had the bubble study last year....no hole in my heart. I actually find being on oxygen quite irritating when I have been in the hospital and had it. But it seems like a good suggestion. Thanks for telling your story because I do think it will help someone.

Hi Womble, You might want to read this thread and the link in it. http://forums.dinet.org/index.php?/topic/27750-occipital-neuralgia-vs-migraine/ Also, you may want to read up on trigeminal neuralgia also as it is similar to the occipital neuralgia described in the link above, however, trigeminal neuralgia affects more of the face. Feel better!

As far as I know, the amount and frequency of the dosage won't make a difference. Each drug is metabolized through a certain drug pathway that is associated with a specific enzyme. There are several different pathways and some drugs have a primary pathway and a secondary pathway. The gene mutations somehow affect the enzymes but I'm not sure I can explain that part. The alterations to the enzymes is what changes the metabolism. There are normal, slow, and rapid metabolizers. Among the slow, there is also a really slow category, and, among the rapid, the is a really rapid category (my current POTS brain can't think of the actual language they use for the really slow and really rapid mutations. ) When they inject IV morphine in me, I literally feel nothing, like it didn't even happen. When I take certain oral narcotic pain meds, I never feel altered in any way and it may or may not take the edge off my pain but it only lasts a couple of hours, never a whole dose. Each drug is slightly different in how much effect it does or doesn't have. And only drugs metabolized by the specific pathway affected by my mutation are have an altered efficacy.

Hi. Thanks for the kind words. Sarah - the gabapentin nor the amitryptiline helped with preventing the migraines/pain at the base of the skull. I did try a left over hydrocodone last night because the pain at the base of my skull was unbearable and that did give me relief but it's back again today. Now, today, I also have a muscle spasm from the base of my skull where the pain originates and it's running down my neck and along the inner edge of my shoulder blade. But that may be a clue too because muscle impingement on the occipital nerve can be related to this. I do feel like I am dealing with both because this morning, it only hurt in my eyes and my right temple. After moving around a bit early afternoon, the pain in the back of my head started separately from the pain in my eye/temple. Whatever it is we need to get on it because I have been toast every day for weeks from this pain.

I always pray for an abscess! Totally treatable and very short lived! Lol! Keeping you and him in my good thoughts!

Thanks. I appreciate the feedback and am sorry you had to go through it as it is quite painful. Mine is more of a chronic, constant throbbing to stabbing pain that waxes and wanes on the pain scale from a 2 to an 8 but never goes away (since August although I had it more intermittently prior to that). I used to not have pain at the base of my skull (which radiates over my head) but I have pretty consistently now for the last few months in addition to pain in my temple, eye, jaw. In reading the link I attached, it looks like you can also have both migraine and occipital neuralgia. I have a sneaking suspicion I might have both having now read more about the whole thing.

In my research on occipital neuralgia tonight, I came across a condition called cervical vertigo. I didn't love the site I was on but it might be worth looking up to see if it fits the vertigo pattern.

Hope Soulie is ok!

My consult with a new rheumy today resulted in one new recommendation (and a convincing conversation justifying why I don't have a rheumatologic issue and EDS does explain certain aspects I wasn't sure about.) He said he would like me to explore, with my neurologist, occipital neuralgia as a differential diagnosis to my never ending migraine. He said it is not easy to differentiate because the symptoms are so similar and it's not uncommon in EDS patients. So, other than the information in the link, does anyone have any familiarity with this or words of wisdom? http://www.hopkinsmedicine.org/healthlibrary/conditions/adult/nervous_system_disorders/Occipital_Neuralgia_22,OccipitalNeuralgia/

Kind of....I can never go all day with my feet on the floor. I also have daytime hypersomnia, so the time that I'm awake, I can be in a sitting position and/or sitting up with my feet up, but I do take 2 naps because of extreme fatigue, not tachycardia/presyncope. I generally nap on my couch, so I'm at about a 45* angle with my torso when I nap which is more elevated than when I sleep in my bed at night.

Barometric pressure changes are a problem for me too both with POTS and migraines.

I haven't taken ate no lol but I did try 2 different beta blockers and had very different experiences on each. Metoprolol did help my heart rate and I didn't feel any fatigue from it. Propanolol did not help my heart rate and made me feel like a zombie on only a 1/4 of the lowest dose tablet. (I ultimately couldn't take beta blockers because they made me a bit wheeze and it turns out I have MCAS. BB are contraindicated for MCAS for just that reason.) But, my point is, if this BB doesn't work for you, another may if you and your doc are willing to try to find the right fit.

The wedge feels different to me than my stepfather ' s recliner. I can't sleep in the recliner (which is interesting because I recovered from the fusion at their house in the recliner for the most part.) I will also say that because of the EDS, some nights, I have to completely rearrange the pillow situation. I probably have about $700 worth or orthopedic, memory foam, hard, soft, wedge, flat, etc pillows on my bed and use a different combination of them on any given night. But I do try to stay on the wedge most nights if I can because of the POTS. Learning to sleep with the elevation is an adjustment but it was doable for me. I don't actually feel very good when I wake up if I sleep flat....lots of nausea and weakness which I think is my body having a hard time adjusting from completely flat to an upright posture.

Did they do an EEG last night at the ER during this "freezing episode" to check for seizure activity?

Ancy, I'm so sorry to hear about the wound infection. I will keep you on my good healing thoughts for a quick resolution to this. Katie

Roxie, Raising the head of the bed will help. I also have c-spine instability and fused c4-5. I have a wedge pillow that I use under my regular pillows which gives 7" of graded elevation. The wedge is long enough that my whole torso is on it so I can sleep on my side. I also have a neck collar that I sometimes have to sleep in to keep my neck in proper position.

Roxie, The theory is to do it gradually. If you are laying with two pillows behind you, add a third for 2-3 days, then a fourth for a few days until your upper body is upright. Then build up the time you can have your feet on the floor the same way....5-10 minutes at a time (even slower if your a fainter.) It's like desensitization to the upright posture. Also, it is often suggested to elevate the head of the bed on blocks/bricks so the body isn't lying so flat at night. Some days it's easier than others. I still have some days when I have to keep my legs elevated and not sit with my feet on the floor.

Use a small roll of paper towels to make a neck roll to put behind your neck. You'd be surprised how much fatigue it saves because it helps support the weight of your head and keeps your neck in a proper posture. You can do the same for a lumbar roll or use a towel rolled into a cylinder and put rubber bands on the ends. Tennis balls can be put on the floor to roll under your feet to give a foot massage and help circulation. Changing the seat position every so often changes the pressure points and reduces stiffness/pain. (Tips from my old chiro when I had to drive a lot for my job.)

I don't recall seeing Depo produce any of those side effects, but, we seem to be a patient group that has anomalous reactions to meds. My neuro has me stop a med to see if it is causing a new symptom, then restart of the symptom doesn't go away while off the med. Depo, unfortunately, wouldn't be an easy drug to do that with. Also, in theory, the Depo should help migraines and any sort of inflammatory pain by stopping the hormone fluctuations over time. Again, that's all theory. Amitryptiline helped my migraines for a while but eventually stopped working as my migraines progressed. This is probably one of my most elusive problems as we can not figure out what the cause or triggers of my migraine are (except for the changing barometric pressure and I haven't found the treatment for that yet! Lol!) There are other drugs that could be tried as migraine prophylaxis such as Depakote or Topamax, Botox injections. While there are potential side effects with them, relieving/controlling the migraines could end up being a major factor in her wellness as migraines can cause many of the other things you talk about....vertigo, pain syndromes throughout the body, etc.. My bet is my health would be a full 50% better overall if we could control my migraines because of how many debilitating symptoms this causes me. Also, I am now in a situation where we can not break my migraine. I've had a headache since August. It's not a good situation both immediately and in the long term because it significantly increases my stroke risk (and having EDS , that makes me very uneasy), so you don't want to get where I am on this subject. And, I wish I had an idea for you, but just anecdotally, my hair thinned significantly too through this journey and they don't have an answer for that either. I have thick hair and I had a lot of it (I used to not be able to find barrettes that could hold all of it.) While it still looks like I have a normal amount of hair, it has thinned a lot....no more problems finding a barrette. It was never like alopecia in that there were never bald spots just thinned out. I have started taking a hair, skin, and Nails supplement and that has helped stop the progression (my nails also stopped growing prior to the supplement.)

Welcome to our community!

Happy Father's Day to all the dads on our Forum! Hope your day was filled with lots of fun and love!

I have constant tinnitus, actually all my life. When my tachycardia gets bad, I'm short of breath, or am overheated, it becomes pulsating. I think it's fairly common with POTS.

I told my cardiologist it's her fault my diet is terrible because she encourages my Ramen noodles! I like really dark sea salt chocolate!! Mmmm......

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4300794/

Frozen waffles. I can't believe it.....they have .5 g of sodium per serving.