ajw4790

Thank you for sharing your positive story! Congrats! You went on a retreat or something a while ago right? How did that go? I find your story so interesting! So, main thing you found that helped was to tilt the head of your bed or your chair at increasing increments every four days? Did you spend all of your time in the two environments? Were you on any meds? Do you require any meds or lifestyle changes currently for O.H.? (Do you wear stockings?) Congrats again! Hope everything goes great at college for ya!

Congrats with all the improvements! Hope it stays that way for you!

Hi all! I was curious if anyone else has ever had a similar experience, and if you know what these symtoms normally indicate? Is it normal IBS or urinary pain or something else more serious? So, I had this intense pain wake me this morning about 3 hours into sleeping, and quite a while since injesting food. It was this wave-like, rolling, cramping pain. It felt like some one squeezing and kneading my insides. The pain went from pectoral area down to a little above where menstral cramps would normally radiate from in the lower abdomen. The pain is mainly in the front of the abdomen, but I have felt a little in my shoulder blades. Earlier I could hardly get out of bed, it took me like 20 minutes to get myself to the point to be able to get up to go to the bathroom. I was having different pangs of needing to urinate, almost like because it gave more room or something in it was toxic to my body. But, it wasn't the gotta go feeling, but rather a my bladder really wants to get rid of this feeling. Weird... The worst of the pain is in the upper middle abdomen, and probably a little more on the left than the right. It went on full blown for a few hours and I slept it off. I took ibuprofen which seemed to calm it, thank goodness!!! Because the pain was a 6-7 out of 10 and I was close if it didn't subside to get my dr. to see me today. But, it did get better. Now, I have this raw sandpaper type feeling in my abdomen. And these every once and a while pangs of pain in the upper left quadrant. Sometimes it even feels like warm liquid swishing around. Again, weird... Anyone have a similar experience? Is this a non-normal IBS etc. thing, and more of a go to the dr thing or is this just IBS type symptoms that I really hadn't had before. It really didn't even feel like bowel or stomach pain. It felt more urinary or something else... I don't think I have ever had anything quite like that... Any input would be helpful and appreciated!

Hi, I read your post and was thinking that this pretty much sounds like me, and that I have some answers, but not THE answer. I too have endured the oodles of tests to only find that I am pretty healthy other than all this. Which is a lot more than most of these drs realize. I am a 25 y/o female. I had to leave grad school due to medical reasons, so I can ID with many of your daughters issues of dealing with university life and all of this. (make sure to start working with disability services early.) I too have POTS caused by small fiber neuropathy (sensory and autonomic) and insuffcient nerve conduction to blood vessels causing pooling in legs and abdomen. I have reached this point as well of is there anything else to do? Anything to slow or stop further issues etc??? Most drs. act like it just won't get much worse so don't worry about it. But, how can you not wonder how much more will your body fail? I have just been put through the regimen of meds to see what sticks and what doesn't, but that only treats symptoms. Otherwise just lifestyle changes and trying to do things to offset the neuropathy. (ex. work out legs to improve blood pump back upwards and decrease pooling, but again this is just a temporary type help, and not a permanent answer) I don't think there is much else for patients like us at the moment in time, at least from what I understand. The only thing would be to continue to look for any other one in a million obscure reasons for autonomic neuropathy... The best "help" I have had recently is to get a detailed look of all vitamin, mineral, etc. levels and work to treat any deficiencies. Make sure they check ferratin too to look at her iron levels- many drs. miss this one. Mine got all the way down to 3 and should be at least 60. It was making me sooo much worse. Other than correcting things like this (that may even be caused by the neuropathy due to malabsorbtion etc. if the stomach/bowels are involved), I don't have many ideas. I just wanted to say she is not alone. Congrats to her on working towards such a great career. It is wonderful! I hope that she is able to get some relief while she is in undergrad to allow her to go to and enjoy med school. Physical therapy school was awful with this, I could not imagine med school. I hope that helps some, or at least answers your questions. I was kinda just writing what came to mind... Hoping that things get better for your daughter soon!

I can nap most of the time no problem. I am so tired an fatigued that it comes easy. But, I should also add that I am a night owl and sleep during the day anyways. But, I likely wouldn't nap well in my awake hours (night) all the time. When I am on a normal day-night schedule I can nap, but recently have been quite the nightowl. I have had a lot of insomniac episodes where napping or sleep of any kind was insanely difficult. That was mostly caused by meds. Other times by the air being to hot, dry, or humid and with sleep apnea didn't sleep well. But, with the med issues I have gone over a week with less than three hours of sleep a day that is broken and almost more tiring than just staying awake. I totally understand "tired but wired"!!!

I do, but for me it is linked to acid reflux type issues normally causing me to feel nausous. OR I also get it when I drink hot liquids, I can get extreme nausea, and gagging, but not actually vomit. I am better with this now, but I used to not be able to tolerate any hot liquids. Hot tea was the worst.

Congratulations Ernie!!! Thank you for letting us know how you are doing! It is great to hear great news! You deserve it! Thank you for doing this research study and working again with your family to complete it. Keep us updated on how it goes. I hope that it yields useful information to your family. YAY Ernie!!!

I too have the diagnosis of Fibromyalgia along with POTS. Fibro. was diagnosed by a rhuemy at the Cleveland Clinic. She felt that what I was on med wise was already what she would prescribe, so she made no changes for me in regards to meds. I was already taking Cymbalta and Neurontin. Otherwise I am not sure that I do much that would be considered Fibro. treatment. Fibro. symptoms are not the worst of the symptoms normally for me. I used to treat it more... I would use the paraffin wax bath on my hands and hot packs on the joints. (the kind that are filled with rice or corn and you microwave and provide a form of moist heat) I have also used massage, in the form of massaging the major muscle groups myself. You can also use a tennis ball to massage/run over trigger points... Otherwise, I guess working on my sleep and relaxing. Also, mild exercise, especially on the swiss/exercise ball- but, that always makes me dizzy. I think thats about all I can come up with that I have done.

Hi! Welcome back! Sounds like things are quite frustrating etc. Hopefully you will be able to use us as a source to vent. If you have questions or something you want to talk about, everyone here is quite helpful and good "listeners".

Well after moving to Illinois 2 months ago, I was battling and trying to get into see a PCP. First problem was there was not much at all to pick from. Then, I went with one dr. and had an appmt. to see her scheduled, and the day before the appmt. I got a letter in the MAIL saying that they canceled my appmt!!! And no mention of rescheduling! So, I called and they said I would have to wait yet another month to see this dr!!! I needed a PCP do testing and followup stuff, and really did not see how I could continue to wait. So, I asked if I could get in to see any other dr. sooner??? Amazingly, there was a new dr. coming on board the following week and I got into see them last week! YAY! FINALLY!!! I was not sure what to think, and was did not have high hopes. I did say though if it went poorly I would pitch a fit, but lucky for them it went much better than I expected! The staff was kinda grumpy, which set me off in a negative tone for a bit, but luckily I did not let that get to me too much. I did try pretty hard ahead of time to come prepared with my records, what I needed from the appmt, and printouts on everything "me". Thankfully both the nurse and the dr. were very receptive and grateful that I took the time to type up all my meds, diagnoses, symptoms, and prior drs (w/addresses and phone/fax #'s).It made things SO much easier, and they could see I cared and was trying. And that I was trying to make their jobs easier. The dr. introduced himself, and saw the papers on the table, asked about them and started to read. He got to the diagnoses, and said something like "Ah, so you have POTS." I was amazed! He knew what it was, said it right, and didn't seem to be bothered or annoyed by it! If anything he almost seemed "happy" to have a not-so-straightforward patient. What a relief to have a knowledgeable and OPEN-MINDED doctor!!! AMAZING!!! So, he continued to read what I brought, ask me questions, and did the physical exam. He was done with the exam, and sat back down to ask me some questions, and I was still sitting on the end of the table with my feet dangling. I was not sure what he had planned etc. So, I rolled with it as long as I could. Finally, he asked me a question and I could hardly comprehend the sounds coming from his mouth, so I had to ask to sit in the chair. I think I almost suprised him, but it was very receptive and understanding to the fact I do not sit like that very well. So, I moved, asked him to repeat the question, and proceeded to stumble around to form an answer. AND what did he do after I finished answering the question? He took my BP!!! I was amazed! And HE a DR. took it for the second time!!! He almost seemed intrigued by me, this incredibly odd creature, who only needs the force of gravity to knock her out! My systolic went down 20 mmHg. So, I showed him right then and there! After that at least he knows more of where I am coming from... I couldn't have even planned for it to work like that! So, I was very impressed by my first appmt. I got some blood work done, some referrals to local specialists, and HE asked if I need prescriptions renewed! Amazing! He even agreed (actually quite eagerly) to refer me to the Mayo Clinic (MN). So, we shall see how that plays out. I just had to share, because I was amazed that there are drs. like that out there!!! AND that my body (for once) decided at an appropriate time to show its true self to a dr. and help them understand what I deal with, and what I need help with. I am just hoping that future appointments can go just as well (or at least close to it)!!!!

Thanks everyone for even more great ideas! I would have never thought of some of these, and some I am hitting myself on the head thinking "why didn't I think of that?"! I am going to have to start trying some of these ideas to see what does and doesn't work! Thanks!!!

Hi, A couple of days ago I started remembering a discussion with a dysautonomia specialist (I forget at this moment who it was...). It was that they have started seeing more and more positive data for using propranolol over other BB's. So, at some point they thought I could think about switching back, even though I had previous negative side effects with it. It sounded like there had been a recent conference on the topic and that it would be in a journal. So, it will be interesting if we see this information published...

Congrats Maxine!!! I am glad you got some good news!!! YAY!

Thanks everyone for great ideas and thoughts! Keep any ideas coming!!! I still am unsure how to keep them up on my legs? Anyone else have this issue? How do you deal with it? I even have the type of stocking with the material around the top that is not supposed to slide... It is like the stuff you put under rugs so they don't slide around. I don't get it... I think they just can't stand me! Oh, and they are open toe. I may have to go back to trying just knee high... And yes, I am quite the pooler! Learned that from that CC testing! (the hard way, not sure though there is an easy way to learn you are a pooler) Thanks y'all!!!

Hi, I think I had thought of a question or two to ask you, but now that I actually sat down to post I have forgotten them... I will try to remember... But, I did want to see if you had discussed it with a dr. and gotten any testing done on your spine like an MRI? I had also wondered about Chiari, tethered cord etc. Along with pinched nerve, disc compression or something... You had that one AVM right? (kidney) Have they ever looked or discussed the possibility of having others that could block/slow blood flow etc? I hope you are able to discuss this with a knowledgeable neurologist!

Hi, How are you doing? Hope you are feeling better!

Wow! Everyone has different, yet similar stories in that the altitude and pressure greatly effects them. I recently flew from St. Louis, MO to Miami back and forth. It was my first time flying in over 10 years, and since my diagnosis. I felt the most symptomatic when they were pressurizing the cabin, then next most symptomatic on descent, then ascent, and both trips were quite turbulant the entire time... So, that got me a bit as well. The worst may have been skid abruptly to a stop in Miami... Worst landing me and the rest of my family have ever had. Not sure why it was necessary, but it was fun! Thanks everyone for sharing your story and what works and doesn't. I may have to fly again in the near future and between my experience and what you guys suggest, I have learned a lot!

I think with your medical history it is more than reasonable! Do they know your history/situation? I realize it is not really their business, but maybe they would be more understanding? They should understand that you do not want to risk your life for volunteering your time! I hope that they can at some point understand why you feel this way!

Hi all! So, I have tried a few different forms of compression (thigh high and abdominal) without much luck. I have no real idea how they effect me symptom-wise, because I do not tolerate them very well. My first issue for fitted thigh high compression stockings I have is getting them on (and later off ), because of my joints etc. Every time I have tried compression stockings I end up with at least one sprained joint, normally 2-3! And they then bother me for days. Also, even more unfortunate is if the sprained joints are covered by the compression, because then it just continues to bother that joint the whole time the stockings are on. What do ya'll do to lessen joint "casualties" while putting on compression garments???? I also find them pretty itchy and sweaty... Also, they won't stay up for anything... how do you guys get them to stay up? Suspenders??? I am (and always have been) super sensitive to sensory input. The whole constant feeling of being squeezed gets to me. I am someone who likes looser clothes, nothing too tight. Sometimes can't tolerate much of the way of bedding etc... Can't stand tight hats, turtlenecks, tight sleeves etc... Anyone else like this? Did it get better over time? Back on the topic of how my joints react to the compression... Because of the way the compression "forces" your joints to line up/act/react I feel like in the compression I have more joint issues, and eventually I end up injuring myself because I am not moving "normally" for myself... Anyone else get this??? Does it get better??? I try compression one day, I need like a week to recover from it!!! It also takes WAY too much physical energy to put them on! I almost always pull an abdominal muscle when I put them on as well. That then bothers me for days... So... at this point the possible benefit for me is not outweighing the negatives. Do these negatives get better over time, to become worth it? Any secrets out there??? I still have yet to actually put my hands on the type of abdominal compression that I have wanted. SO, if you have a favorite and it is online, can you post a link or a picture etc??? So, far either what I have tried doesn't stay in place or creates too much heat, and sends me into an instant tailspin. I get overheated and nausous... near faint. I think my issue that b/c of the neuropathy I mainly "breathe" through my core, and this totally suffocated my core from breathing. Any ideas??? Am I the only one with these type of issues with compression??? Thanks!!!

So, the grid puts me in the monoclonal gammopathy with bone marrow suppression category. Whatever that means...? I googled it, but it still looks like if you are anemic, it is more likely to be anemia than anything else. The other thing I did notice is it can indicate Waldenstrom's Macroglobinemia which my grandfather had and made him quite sick most of his life. But, I had been told before that my tests did not point in that direction. So, I don't think that is the issue with me, but it does kinda keep popping up in some of my research... But, there is also the question to whether or not he was properly diagnosed? Not sure...Who knows...Maybe one of my new drs (if I ever get any) will have a clue.

Hi, I am not really familiar with what it is that the osteopath is going to do. I did want to say though to watch any chiropractic type treatment if you have EDS or may suspect EDS or other connective tissue disorder. It sounds like they are talking more of a craniosacral therapy, but if it is adjustments etc. at the base of the cranium/skull and the vertebrae of the spine that is a different thing. If you are unsure about the treatment, ask them to clarify what they will be doing. Even ask for any info they have written up on it. It would also be ideal that there would be some evidence written up to back up their treatment, but that does not always happen if it is a "newer" or untested treatment. Also, make sure they discuss the risks and benefits of the treatment with you. If they aren't comfortable sharing much info with you, then that may say something... Let us know how it goes!

Hi, What is your "normal" temp during the day? (how much of an increase is it?) In the afternoon/night hours it is natural for a persons body temp to go up some, but as to how much is normal I am not sure. Also, as someone mentioned if I am over active, and overly stress my body, I will get this overall feeling of burning up temperature wise. It can last for hours, and is more of a reaction of an overly ramped up ANS/body going haywire, than something like an infection causing a fever. It is a sign that I have to rest. It is different than how one gets hot when working out etc, because that goes away when the activity ceases etc. I could get this reaction if I was outside with no coat and it is 20 degrees outside. For the scratchy throat, make sure you are drinking enough. This may also all be your body telling you that your dehydrated. Or does your job cause you to talk a lot during the day? Hope some of that helps!

Hi, Wish that I had some info to offer... Just wanted to say to make sure and discuss it soon with your dr, and see what they say. It may be that it was too fast for your body to go from being on Zoloft to taking absolutely no Zoloft. You may have to wean off slower or something. Other than it being from that reason, I suppose it could be due to hormonal imbalance, thyroid issues, etc. So, that is why it would be good to see and talk to your dr. about what is going on. I hope you get some answers and relief soon!

Hi, I wonder if what you are referring to is posts regarding MCAD? I know that it has been discussed that BB's are not tolerated in those with MCAD. And MCAD is "allergy-type" reactions (but, not true allergies). Search MCAD on the board if you think this may be what you remember seeing. Otherwise, BB's can blunt the allergic response in a person. It is why can't get allergy shots on BB's etc....

Hi, I think Propranolol is the "go to" beta blocker to start with for many reasons. Most of the dysautonomia specialists recommend trying it first. It is one of the older BB, so I think drs feel more comfortable with it. I also believe it has lower side effect risk in comparison to some of the other BB. It is a non-selective BB as well. It also has fewer other meds that should not be used at the same time as Propranolol. I am sure there are more reasons, esp. more scientific reasons...