Katybug
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Posts posted by Katybug
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Hey Naomi!
I tell my mom all the time that I feel like I have aliens in my gut. I can actually watch my abdominal region expand when I am really POTSie (I end up looking like I'm pregnant!). It's not gas...its the blood pooling. I can even see my "heart beat" in my abdomen while I'm laying down. It happens no matter what position I'm in...standing, sitting, laying down, and, it gives me that swirling feeling you mention. Plus, it sometimes causes sharp pains for me. I know what you mean about wanting to apply pressure too, but, I feel like my hands aren't big enough to apply pressure to a big enough area. I even have to keep different sized pants at this point as I can wear anything from a 6 to a 10 depending on how bad of a day I'm having with the blood pooling in my abdomen. It's freaky!
Katie
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I third that description..completely dead!!! Then, the pins and needles start.
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lgail,
I agree with both Sandy and songcanary...see if this was just a bump in the road, but if it doesn't work out, take it as an opportunity to interview docs and find a good fit. I would also add that looking for a cardiologist or neurologist that is willing to take a special interest in your case (either because they already have some specialties with POTS or because they are willing to learn) could be really helpful.
I have been lucky to find both...the cardio that dx'ed me was mostly unfamiliar with the treatment but wanted to learn, and, I was referred to a neuro whose specialty is autonomic dysfunction and migraines. Having them on my team has been a God-send! My PCP is supportive but flat out admits he could not be my main source of treatment as he just wouldn't know enough. He only has me come in every 3 months so he can keep up to date on what is happening with me in case he needs to treat me for something more common like an infection, cough, etc.
I wish you all the luck in finding a great doctor and hope you continue to have more days like today!
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Does anyone else go through cycles when their limbs all seem to fall asleep easily? Anyone know why it happens sometimes and not others, but, seems to be associated with the joint pain?
I just started having a lot of joint pain again and now my limbs are falling asleep multiple times a day. This same pattern has happened before. My arm will fall asleep if I lay on my side too long, my leg will fall asleep if I have it bent too long or I sit in the same position too long.
I sooo wish we could put all these puzzle pieces together and come up with a complete dx!
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Comet,
What are the chances of you being able to see a new cardiologist?
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Hi everyone,
I, too, am really confused about the whole thing. I know for sure that the Lyme doc that did the test on me originally referred to it as a test for "inflammatory markers". That is backed up by what I have read. Then, I started to see the link between these proteins and mast cell degranulation.
So here are some of the things I have found..odd sorts of links but you can still read the info. They seem to be reliable sources. If anyone knows anything else, I would love to hear about it. Thanks to all that responded...sounds like there may be somehting to all of this...CONFERENCE HIGHLIGHT
The Shoemaker Studies
The innovative CFS physician Dr. Shoemaker has been quite busy of late. He presented not one or two but three clinical studies. All were pilot studies that need to be replicated using a more vigorous protocol – something Dr. Shoemaker plans to do – but all were quite successful. Two of them involved EPO or erythropoietin, the drug Dr. Hurwitz used in his unsuccessful NIH study. We turn to these first. It was unfortunate Dr. Shoemaker was not given any time to speak.
EPO and the Immune System
Ritchie Shoemaker and Margaret Maizel. Treatment of elevated C4a in patients with CFS using low doses of erythropoietin safely reduces symptoms and lowers C4a: a prospective clinical trial (poster).
One exercise study showed that CFS patients have increased levels of a powerful pro-inflammatory anaphylatoxic component (C4a) of the complement response after exercise. Despite its positive result this study seemed to be doomed to the dustbin of CFS research history as it has never been replicated and is now only rarely mentioned. Dr. Shoemaker certainly took notice of it, however, as he reports here that he has found that levels of the C4a protein have been commonly elevated in the 1000 CFS patients he has seen. Consider that earlier study replicated!
Erythropoietin (EPO), interestingly, given its function as a blood volume enhancer, is apparently also very effective at reducing C4a levels in inflammatory diseases. This lead to Dr. Shoemaker giving 60 CFS patients 8000 units of EPO five times over 15 days and then measuring their C4a and symptom levels.
The results had an interesting dichotomy; while the C4a levels in all the patients dropped, about 80% of the patients symptomatically improved while 20% did not. It turns out that the 20% who did not improve had exceptionally high C4a levels. Normal C4a levels are below 2830 ng/ml. The responders dropped their C4a levels from 8300 to near normal, about 3200 ng/ml. The non-responders initial levels were so high, about 19,500 ng/ml that even substantial improvement still left them with higher levels than the responders had at baseline (12,500 ng/ml). In short, it appeared that their C4a levels were too high for the EPO to give them relief at the dosage given.
What happens after CFS patients get off a drug is almost as important as what happens when they are on it. Dr. Shoemaker found that 2/3rds of the responders relapsed while 1/3rd of them did not. This short test of EPO appeared to fix the C4a problems in the non-relapsed group - their C4a levels remained low – but did not in those who relapsed – their C4a levels zoomed up again.
EPO and the Brain
Ritchie Shoemaker and Margaret Maizel. Treatment of CFS patients with elevated C4a using low dose erythropoietin corrects abnormalities in central nervous system metabolites and restores executive cognitive functioning (poster).
EPO has neuroprotective as well as anti-inflammatory (and blood volume) properties. There are two ways it protects nerve cells, both of which are of high interest in CFS; it improves blood flows in the capillaries and it prevents nerve cell apoptosis or suicide.
Dr. Shoemaker gave the same amount of EPO (5 doses of 8,000 units over two weeks) to 35 CFS patients and measured the metabolite levels in their hippocampus before and after treatment. Interestingly his initial testing found the same thing Paul Nestadt did in his MRS study (see Brain section); high lactate levels (77% of CFS patients) plus abnormal glutamate/glutamine ratios (97% of CFS patients).
He found that lactate levels normalized on EPO in all cases and glutamate/glutamine ratios normalized in just over half. He believes, in common with Dr. Park, that CFS is characterized by a systemic (central nervous system) inflammation and that bringing down the inflammation was the key to the cognitive improvements seen. He did note that the cognitive problems in his patients were not resolved. Both Dr. Natelson’s and Dr. Baraniuk’s cerebrospinal fluid studies may also suggest CNS inflammation is present.
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So, due to the Lyme, I had a C4a test in 2009 that was off the charts...59,000+ (normal is <2,900). When I shared it with the POTS doc last week, he definitely raised an eyebrow and it precipitated scripts for many many tests. As I have researched, it seems that C4a causes mast cell activation.
Has anyone else had testing of their complement system (C3 or C4) and if so what if anything came of it?
The research I have found clearly states a link between C3, C4, and C5 and mast cell degranulation, but it is vague about the full implication. It stops just short of saying that these proteins cause MCAD.
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Steven,
I have a Belladonna script for the severe abdominal pain I sometimes experience from the POTS. It does calm all of my symptoms. As it is addictive, I only take it when I have the pain and laying down does not relieve it. Plus, my body often builds up a tolerance to meds easily so I do not want to risk making the low dose I use ineffective since it is the only thing that makes the abdominal pain stop.
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I also did fine with Cipro and I do have quite a few antibiotic allergies. Good luck and feel better!
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I periodically experience this pain sensation and it feels like I am having a spasm in my blood vessels. I described it to my POTS doc (in the same way and places that you have noted) and he said that it could be spasms but also asked me some questions about the pain to rule out neuropathy issues. He didn't mention anything about clots but I really think that we have such strange stuff and are on such complicated meds that we should tell our docs if we have any new symptoms especially if we know they can be symptoms of something serious (clots, heart attacks, strokes.) That being said, I have had this pain periodically (1-2x/wk) for a few years now, and it has been irritating (and sometimes breath-taking) but not immediately harmful. My suspicion is that it has to do with changes in the vascular tone and blood pooling.
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Hi Beckles.
I am sorry that you are having a relapse and have need to come to this forum, but, welcome! I do not have children so I can't shed light on that point. But, everyone here is quite helpful and is great for moral support. Hope you are able to find some answers.
Katie
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That's great that today was better. Maybe it just needed to be aired out! I really have my fingers crossed for you that this new place gives you a much deserved break from the grind of this disorder.
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I have no curve left in my cervical spine...it is completely straight! Not good cause the chiro says all the weight of my head comes straight down instead of being distributed. I sometimes feel like a bobble-head because my head feels so heavy. The neuro/POTS doc also says he is sure this contributes to my migraines. I can feel golf ball sized knots in the muscles at the base of my skull particularly when I have a migraine and they hurt so badly to be massaged.
The chiropractor has really helped me keep this issue in check. He also gave me a trick that really helps me when my head feels heavy...Take a new roll of paper towels or a bath towel rolled to about the size of a roll of paper towels and put rubber bands around it so it doesn't unroll. Sit in a high backed chair (or this works great if you are traveling by car or plane) and place the roll behind your neck between the base of your skull and top of your shoulders. This takes a LOT of pressure off your neck muscles and nerves because it helps support the weight of your head. (Can also use this trick for lumbar support.) He said the size of a paper towel roll is a good simulation of the proper amount of curvature you should have in your neck.
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Hi Lieze,
I have one from the Smarter Image. Its an older model that they don't sell ay more but their newer models are similar. I will say that it will only cover one room, so you would need more than one to deal with the whole house.
ALso, was thinking of you on Friday. My house (which I am not staying at due to POTS but hope to go back soon) is my grandmother's old house. She never had the HVAC vents/ducts cleaned. I just had to have a new furnace and AC put in cause a storm blew the old system out. SO, I decided to have the duct work cleaned (not really good for my wallet but I figure it would probably help my health.) My house didn't seem musty, mildewy, moldy, or even unreasonably dusty. OMG! When they took the vent covers off there was gross amounts of dust and mold (not black mold, but greenish/grayish dusty mold) all in there. I went ahead a forked over the extra $ to have them spray moldicide into the system as they said that it would come right back if left untreated. The moldicide actually made me feel worse but that was because it was strong at first. That settled down and I was coming back to Mom's anyway. But I thought of you and wondered if you have considered having the ductwork cleaned if this is not a new construction home.
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My tetanus shot didn't bother me at all (that was last year but I had all my POTS symptoms then) and I just had my first flu shot ever last week and that went fine too.
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My POTS doc started with what seems to be basic autonomic testing. A sweat test and some breathing tests. He is just having a whole slew of blood work done now to test catecholamine levels, tests for autoimmune diseases, C3 and C4 (this is because I've had a high C4 before so I don't know how common this is), mast cell diseases, and thyroid testing. Other than the catecholamine levels, the blood work he decided on for me was based on my medical history and my family history.
I will say this...I spent several hours putting together my history and my family history with as many old labs to back it up as I had and then I made a lit of questions. It really helped and we got through a lot of information in an hour. Without all my prep, I don't think I would have gotten the prescriptions for all these tests.
Good luck at your appt.
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I wish I had a good answer to this. My docs ask me each time I go and I try to explain that my worst 3 symptoms today might be different tomorrow. The dizzy, brain fog, drunken feelings are bad. But, if my GI issues kick up, then they are the worst. During the hot weather, the tachy, short of breathe, strangling feeling was the worst. Migraine days are also a whole different ball game.
Can I get a fullbody transplant??
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Steven,
I get a droop in my eye similar to this when I get a really bad migraine. But, since you have a history of Lyme, has the Lyme specialist checked out any pics of this symptom, since Lyme causes Bell's Palsy which can look like this as well? Also, a lot of what you are describing still sounds like the pain I experienced with tick-borne illness. I don't know if you had a chance to look at the links I included in response to your first post, but if you are any where near MD, it might be worth visiting Dr. Shoemaker. I have not personally seen him, but he has a protocol for people with chronic Lyme/post-Lyme syndrome that has gotten some good press.
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I agree with the other folks that it sounds like MCAD stuff. I have been researching (since we re thinking that may be my problem too) and found this website last night. I thought it gave a lot of good info.
http://alford.grimtrojan.com/Mast_Cells_GI_Motility_Disease.htm
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GingerA, Have you tried something like Benadryl or Tylenol PM (which is just a combo of Tylenol and Benadryl)? When I have a hard time falling asleep for more than 3 nights in a row, I will take Tylenol PM (cause I usually have some amt of joint pain contributing to the problem) for 3-4 nights in a row. I take it early, like between 8:00 - 9:00 so I fall asleep by 11:00. It seems to help my circadian rhythm "get its own groove" back. I'm also really methodical about my bedtime ritual so my body knows what's coming. Sounds kind of kooky but it helps. I don't take the Tylenol PM for more than 4 days because I build up a tolerance. If I still can't sleep without it, I skip at least one night.
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Hi Steven,
I know you want to find that perfect cure and in a hurry. Please keep in mind that there are various treatments that may be the right fit for you. Your body will, however, need time to heal and some of these meds may take a little while to have their full impact.
My POTS specialist was clear with me from the beginning that he believed I would get better but that it would take more time than a typical illness because we are really performing a balancing act with our nervous system. My point being, I know it is hard to be patient but trying to force and rush through the process of treatment and healing can be detrimental given the kind of disorder we are dealing with. I find that on days when I let myself wind up about my situation, I end up having a flare up by that evening or the next day, not because of depression or anxiety, just because it is a body's natural reaction to stress.
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My POTS spec/neuro sees me every 2 months and my cardiologist said she would see me on the months that I do not see the POTS guy. She felt that someone should see me every month until we get a good treatment plan going that is working for me. She said we would back off after that. I think the POTS guy sees his patients that are on a treatment plan that is working for them every 3-6 months depending on what meds he has them on.
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I went through a period of uncontrollable crying over the summer when my symptoms were really bad. It was definitely POTS related, not depression related. Even now, a commercial or greeting card that I would have once deemed "cheesy", now brings tears to my eyes. The weirdest part of th cryig is that for about 10 years before was diagnosed with POTS, I couldn't cry...my body would want to and no tears would come out. I think that must have been part of the low lying dysautonomia that's been there for years.
Good for you that you are talking to your kids and keeping them informed. My mom had some chronic, debilitating health issues when I was in grade school, and the times I was scared were when no one would tell me what was happening. (She is relatively fine now, btw.)
Keep your chin up. There is hope.
So here are some of the things I have found..odd sorts of links but you can still read the info. They seem to be reliable sources. If anyone knows anything else, I would love to hear about it. Thanks to all that responded...sounds like there may be somehting to all of this...
New Potsy - My Story - Advice? =(
in Dysautonomia Discussion
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CC- Hi. Sorry you are starting your journey with POTS. I'm glad you found this forum as it is a great resource and source of support. It is very difficult to find doctors that are educated about POTS, but, would you be able to make it to Cleveland? The Cleveland Clinic has POTS specialists that could help you. Also, there is a list on this site in the POTS Place link of doctors that are POTS/dysautonomia specialists in each state...that could be useful for you. Also, the neurologist that you are going to see may be familiar, but, if he/she isn't, ask them if they know someone in your area that is..either a cardio or another neuro. Keep searching...it will be important to find docs that are either knowledgeable or are willing to learn about POTS. I commend you for educating yourself. That's really important when you have something rare like this. It will help you ask the right questions and also give the right information to your doctors. Try to print some info for your friends and family so they can learn about this disorder...it may help them understand. ANd, most of all, be kind to yourself. There is no shame in being sick and you should not beat yourself up over things you can't do...the biggest job you have is to take care of you! I hope your appt with the neuro goes well. Keep us updated!
Katie
Bren - Sorry to hear about your work contract.