Chaos

Wow Katybug!!! That's a big step. Sounds like you are having some really significant neuro symptoms although I don't think of those particular symptoms as being related to cord compression at the levels you're describing so much. One other thing to consider is that when they fuse certain levels, the levels above and below will take even more stress so if you are already having problems at C3, you may find that area becomes even more problematic. I've heard a lot of really good things about Dr. Henderson so glad you are seeing him. Also think it's good to be getting a second opinion when you are talking about something this major. It's a lot to be processing right now and I'm sure your head is buzzing with all the thoughts running around. Sending you lots of good thoughts and best wishes and gentle hugs.

Yes, I have both NMH and POTS. My daughter has been diagnosed with POTS. I have a brother who I suspect has it as well and I think both my sisters (who also are hypermobile like me) have POTS tendencies. I also have 2 nieces who have symptoms but haven't been able to be diagnosed.

My sister was in the hospital recently and the nurse was telling us that there is a nationwide shortage of saline these days. (Really? How hard can it be to make saline? It's salt and water, but whatever...) Anyway, she said that they've been told to use Lactated Ringers (LR) whenever possible now instead of Saline. Maybe all us POTSies using IV saline are depleting the saline supplies, heh? LOL http://www.cortjohnson.org/treating-chronic-fatigue-syndrome-mecfs/drugs-for-chronic-fatigue-syndrome-mecfs-treatment/iv-saline-solution-for-chronic-fatigue-syndrome-mecfs/ The above is a link to another article about IV saline use and has more links within it to other sources of info. I have used IV saline and found it to be greatly helpful. My immunologist ordered it for me but because he is out of state I had to get my local cardiologist to write the actual orders here. The cardio was willing to do it though because he had suggested IV saline as a hypothetical treatment about a year before the specialist in California ordered it. Once he knew another doc was willing to order it, he had no problems doing so. The problem with IV saline is it's hard to have any double blinded random controlled studies because saline is the normal "control" for a study like this if they were testing an IV medication vs a "control". When saline is the "medication" being tested, it's hard to do a study and have a "control" group. If you can bring some of this info to your doc and explain why you think it would be helpful in your situation, he may be willing to listen. If you have any knowledge of how you can obtain the IV fluids (like where an infusion center is that your insurance works with) that could make it easier for him to get it for you, that might also help. Sometimes, with some docs, if it seems like it's going to take a lot of extra work on their part to get you something they might turn you down but if you've done a lot of the leg work for them, they'll agree. Good luck.

Well, if you have doubts and don't feel comfortable...go with your gut. Hopefully your next doc you have in line will work out better for you.

I am being seen by a physician who thinks this is all related. His research, along with a lot of other peoples', is focused on what he calls Neuro-Immune-Endocrine disorders. They see the three systems as being very closely intertwined and they also think the GI system is involved as well. There is another website where you can get some more info called Pandora.org They are an indep. group that tracks research etc in this area of interest. Personally I've had problems with reactive hypoglycemia (comes and goes) and have a Hashimoto's diagnosis, but my antibody levels aren't very high and have normal thyroid levels so not sure that's accurate.

June- While I can understand and respect your feelings and your viewpoint from both a professional and a personal/mom perspective, this may just be simple necessity on the specialist's part. There are so few doctors who are willing or able to treat this disorder and so many patients trying to be seen that they are probably doing whatever they can to get people in, tested and seen-however they can. I suspect they are cutting corners where they can in order to accommodate more patients. Certainly I'd recommend going elsewhere if you are feeling adversarial toward this doctor as it can't be a good experience for either of you now. Just be aware though that all the specialists in this particular area of medicine that I know of who are highly regarded are also very very busy. While I've found most of them to be very caring and compassionate and trying their best to help people, they're also totally overworked. Frankly we are a difficult patient population to work with so I'm always grateful to the docs who are willing to stick with us and help us out however they do it.

Hopefully the doctor you see in the ER will do some Orthostatic Blood Pressure readings and if he does, hopefully he will see what you are seeing. It does appear that your daughter has some type of Orthostatic Intolerance from both her symptoms you are describing and the numbers you show up above. There can be a lot of causes of that...everything from simple dehydration to post-concussion syndrome to Dysautonomia/POTS etc so hopefully they will get the ball rolling of helping you figure out the cause behind her symptoms. You can google Narrow Pulse Pressure (not rate). I don't know of any particular articles off hand but I know my POTS neuro at Mayo says he sees his patients having this NPP frequently and he feels it's a "hallmark symptom" of the syndrome. Unfortunately since most practitioners aren't familiar with the diagnosis of Dysautonomia/POTS/Orthostatic Intolerance etc, they also don't recognize Narrow Pulse Pressure as being a symptom of it Really hope you can find some answers.

Your daughter appears to have some pretty narrow pulse pressures (difference between top and bottom numbers) which are common amongst people with dysautonomia. When those two numbers get too close together you aren't moving blood very efficiently and it can cause a lot of symptoms. It might be worthwhile looking for a neurologist who has some knowledge of post-concussion syndrome as they are finding that those patients have similar symptoms to, or actual dysautonomia. Otherwise it might be worth looking into a specialist in EDS or dysautonomia who would be better able to address your daughter's symptoms from a perspective that looks across more than one body system. If your family doctor hasn't been receptive to your requests for assistance in the past, you might need to look for another one who is more willing to work with you and more receptive to helping you look for answers. Best wishes!

I have a hard time talking on the phone but it's more related to being short of breath and the energy it demands, not due to feeling nervous. I wonder if your symptoms might be from getting so exhausted by the phone call your body is kicking in extra adrenaline which is making you agitated along with the other symptoms it causes? In my pre-illness life, I always paced the floor while talking on the phone. Now if I have to talk on the phone for more than 30 seconds, I immediately lie down on my bed. That helps me think better as well as conserving some of my energy. I also use my caller ID and screen calls. After being ill for several years I've gotten to the point of being able to not answer my phone if I don't feel up to talking at the time. I let it go to voicemail and then check that to make sure it's nothing urgent. Then I'll send them a text response in a couple hours when they are less likely to be free to call back. I use texting and email a lot as that is easier for me than talking. It's taken time but I'm learning that I really have to control the drains on my limited energy supply. Talking on the phone seems so simple but it's exhausting now for me so I guard that access very carefully. It feels antisocial but it's better than being miserable, I've learned. This way I also have energy left for the things and people I really want it for.

That's interesting Blobbydodger because 6 hours is kind of the "magic number" for me too. More than that and I'm worthless the next day. I function better on 3 hours of sleep than I do on 8. I rarely ever sleep 8 hours though so it makes me wonder if the days when I do sleep 8-10 hours are because I'm in a flare or my body is already in a situation where it's basically "done" and so it's finally able to sleep that long. Then the long sleep is probably more of a symptom itself than the cause of my other symptoms...if that makes sense? Tachy- Before I became ill, I could never stand to stay in bed once I woke up. Because of my EDS I had to move my joints as soon as I woke up so I was out of bed within minutes of waking up. Now it literally takes me 30-60 minutes minimum from the time I "wake up" to be alert enough to actually attempt getting out of bed. It takes me at least 30 minutes to get it together enough just to roll over and get my midodrine and fluids down most mornings even though they are right next to my bed. It sounds so dumb because it should be such a simple little task, but it always feels so overwhelming at that point in the day. You're definitely not alone in the brain fog in the morning department. I find everything takes so much longer to do these days because I'm so slow and have to check and re-check everything to make sure I'm not making stupid mistakes...and then I still make them anyway. I've found that it takes me easily twice as long, or longer, to get ready in the morning as it used to do as well.

I definitely feel worse when seasons change. Spring and fall tend to be my worst as they coincide with my worst allergy seasons. It seems the the extra challenge to my immune system on top of everything else always sets off a flare of dysautonomia symptoms.

Here is another link to a compilation that one of our members (Ramakentesh) put together awhile ago for many of the medications and supplements that are helpful for various people. http://forums.dinet.org/index.php?/topic/19324-the-complete-guide-to-pots-therapies/

I use ice for all pain except muscle spasms. I've been a fan of ice for a long time.

Ordering up a (virtual) margarita for my part of the pity-party, please. Hard not to get down sometimes when you have day after day of feeling lousy and constant struggles with no end in sght. While I try to always keep looking at all the blessings I have and focus on the positive and be grateful for the fact that it's "not as bad as it could be"....still it's not what it was and sometimes it's just too overwhelming to contemplate that this is how it's going to be or maybe worse as I get older. Sometimes I just need to let myself totally wallow in the negative feelings that come up rather than trying to push them away. Usually when I do that I find that they are around for awhile but then they actually go away faster than if I constantly try to keep them at arm's length. When I feel a need for a good cry, sometimes it feels really cathartic to do that and think of every terrible thought and emotion I have been trying to avoid, examine it and then let it go. Frequently when I'm done, I naturally start feeling more upbeat again and looking at things in a more positive light. Kind of like going thru a major rainstorm and coming out on the other side to see a rainbow. Definitely need a heavy dose of salt on my margarita glass please.

Scary to think how many kids are being treated for psych diagnoses because they don't have parents willing to fight for their kids like you (and others on here) have Rachel. Same goes for adults who don't have the knowledge base to do their own research and find answers for themselves. While I saw it happen all the time in the hospital, I fail to understand why docs are so quick to immediately play the "psych" card when they don't understand a patient's symptoms. There is no "proof" or "evidence base" of psychosomatic disease that they can show me. Why do they believe that occurs but they don't believe a patient's complaints who was totally normal one day and then suddenly has a list of symptoms? Just because they don't understand it, doesn't mean it doesn't exist and isn't real. Nearly all the diseases that once were labeled psychosomatic have now been found to have a physiological basis...MS, Parkinsons, schizophrenia, depression, to name a few. I agree the DSM 5 Somataform disorder could be a real problem for all of us with dysautonomia, EDS, ME/CFS or any chronic disease that has more than 1 symptom and doesn't fit into the nice little box at your GP's office.

Just saw this article on another site that further explores the connection between POTS/OI and ME/CFS. It also has links to recent studies connecting the two subjects if you are interested. http://phoenixrising.me/archives/23374?preview_id=23374

Not having luck with links these days. Trying again. chronicfatigue.stanford.ed Guess it doesn't want to set up a link for some reason so you may need to copy and paste it in your browser. Sorry.

There is a push to get away from the CFS name as my doctor says "it doesn't describe the devastating effects this illness has on the immune, neurological , endocrine and GI systems". ME was the name applied to the disease that was recognized for decades before the CDC decided to rename it CFS in the 80's. Anyway, that said, sleep disturbances are a hallmark figure of ME. Post-exertional malaise or exhaustion is another one. The other symptoms very much mimic POTS. The statistics vary but from the studies I've read, depending on how the participants were identified (which criteria were used), anywhere from 30-90% of the patients who had POTS also had ME/CFS. Personally I think it's a spectrum of disease and I wish the researchers would get on the same page and use their limited resources together to speed up the research. The docs I've talked to, both POTS and ME/CFS specialists, suspect a genetic connection. My daughter has also been diagnosed with POTS and we've done the blood work to check her immune function but haven't gotten results yet. There is a lot of exciting research going on now in the ME/CFS arena. There is a lot of focus on the autonomic nervous system in some of that research which will likely benefit us all. There is unfortunately very very little funding for that research....about $3 million per year in the US compared to $16 million per year spent on male pattern baldness. ( Given the relative amount of disability caused by the two conditions that seems backwards somehow.) One of the areas of research is that people with ME/CFS are unable to fight off viruses and carry a high viral load. The thought is that the viruses hang out in the nerves, ganglia, brain etc and reactivate at times. These patients have a low Natural Killer cell FUNCTION (not necessarily a low NK cell count). Many of the ME/CFS specialists are using antivirals and immune modulators to help with this now. With the right docs, there can be improvement (still no cure) but some people are getting back to work and school full time etc. Here is a link to Stanford University's ME/CFS website. chronicfatigue.stanford.ed If you click on the tab under infections, there is a box on the left with a bunch of the suspected pathogens they are studying that may be involved. It's a good place to start looking and has a lot of links from there.

Sorry they didn't work. I'll try again. http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full http://www.iacfsme.org/portals/0/pdf/primerfinal3.pdf If they don't work, try doing a google search for the Myalgic Encephalomyelitis International Consensus Statement 2011. It was written up in the Oct. issue of Journal of Internal Medicine that year I believe. Also, you can Google IACSF/ME Primer for Medical Practitioners which came out in 2012. They both have a ton of very helpful info with specific labs, abnormal markers etc that have been found in ME/CFS patients. Being an RN you might be able to get some local docs to help run some of these. If she has this, there have been some new studies out recently that suggests the disease "changes" at about 3 years so people have the best chance of recovery with treatment in that time frame. Other docs report anecdotally that treatment within 5 years is acceptable.

When I was put on an oral steroid burst for my migraine at one point, I too had a huge improvement in POTS symptoms. My doc thought this was another indication that my POTS was likely autoimmune in nature. Unfortunately, not worth being on steroids long term even if they are helpful in the short run as their long term side-effects are too devastating. Sorry for your loss.

Hi June, I don't know if you have looked into ME/CFS much but there is a lot of overlap between POTS/OI and ME/CFS. People with ME/CFS tend to have an immune component to their disease however. I'm attaching a couple links to the latest International Consensus Statements and a Medical Provider's Primer on the topic. Being an RN you might find them helpful and informative. Edited to take the links out, they didn't work. You can find the working links in a latter post Corina I was diagnosed first with POTS/NMH etc, but after reading the above info, I saw an ME/CFS specialist (immunologist) who ran further tests showing defects in the immune system. He said his ME/CFS patients tend to fall into two categories: those who rarely get sick (even with immune deficits) and "those who get pneumonia when I sneeze". Since your daughter sounds like someone who might be in the latter category this might be another area to explore. I think Dr. Stewart does research in both areas (POTS/CFS) to some degree so you might ask him about this too. Happy reading.

Sue- yep- asked my endo. He just rolls his eyes when I mention anything about the HPA axis and POTS. He claimed to be familiar with POTS when I first started seeing him, but haven't been impressed with his knowledge. He follows me for my thyroid and hypoglycemia issues and that's all he really is interested in discussing. I'd try another one, but have a fellow POTSie in town who literally has been thru every endo around here and hasn't found any better so am sticking where I am for now. Sigh.

I don't have high BP with my POTS, so that's not one of my symptoms. But, no I don't have worse POTS symptoms that I've noticed with NSAIDS. In your case, if you are taking the NSAIDs for pain related to your period, it might be hard to differentiate what increased POTS symptoms you are getting from that and what would be med related, since women tend to be more symptomatic around their periods anyway. Unfortunately like everything else, it's probably going to be a personal trial and error since we're all different and nobody can predict how your body will react to any combination of meds....at this point anyway.

When I was whining to my doc at my last appointment about my pain, he suggested trying magnesium and curcumin (turmeric) before trying yet another med. It has taken a bit of the edge off and I was all for not adding any more meds. There are quite a few studies out there supporting the use of these particular supplements.

Mild hypovolemia documented by testing. Low red cell mass by testing. Low MCV and low red cell count frequently on labs. Normal to high hemaglobin. Normal thirst, drinking, urination. When I did the testing for hypovolemia etc, they did it the same day as the TTT where I'd had a bad reaction. The doc, not wanting to risk a repeat performance, did a modified version of the hemodynamics test so didn't really get a good sense of how much pooling I get. Haven't been able to get any of my docs to order aldosterone, renin, angiotensin ll, etc labs.