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Hi Addie. Sorry to hear you can't find a good doc right now. Hang in there. One thing I've learned with this illness is it takes a great deal of patience. I don't know where you live but I know that here at the Cleveland clinic, they have programs that may pick up the tab. You have to speak to a financial counselor. Just a thought.

I'm sorry to hear the news Katybug. It sounds like he was a compassionate soul. The world needs more souls like him. I'm sorry for your loss. S

Hi Addie! Just a lil note. I believe I did read something about celiac and pots but I have no idea where that was. I know the gut plays a large part in our autoimmune processes. Malabsorption can also be an issue. I guess I am being looked at for autoimmune pancreatitis currently. I do not test positive for celiac though. It sounds like it has been quite a ride for you just in getting a proper diagnosis of Pots. God Bless. I hope you find the support you need here. It has been very helpful for me!

Howdy! I got a nice cooling vest on Amazon that holds ice packs. It really helps. I do look like a safari chick but that's ok. Lol.

Nice to meet you John! It sounds like you are on the right track re getting further help. Keep the hope. Something that helped me was getting the full battery of autonomic testing. I had mine done at Cleveland Clinic through Dr. jaeger and it has been a great source of info. No cause found for me but I found out that I have significant blood pooling, sweating issues, etc. I think those tests, for me, have helped re medications, follow up, etc. so welcome! Hang in and we know you are not making this stuff up in your head! It's a journey. I hope this forum gives you a sense of hope and belonging. It has been that and more for me.

Hi Bigskyfam. I am so sorry for your loss. I know how they are our family members and the pain is big. Please know you are in my thoughts and prayers.

Not sure but I am thinking along the same lines as Katy. I have been put in the hospital before through the ER for monitoring for other issues (air in my intestines, they thought I might blow up lol! ) ). Maybe they would admit you for observation due to tachycardia or blood pressure issues? Then, treatment might consist of Ivabradine? Just a thought. This is not medical advise. I am not a doctor. I am just a muse.

Hi Mal! Welcome!

This shows us the positive side of the Internet. People reaching out and helping and supporting one another. Just think....we have peeps from all over the world! Really amazing. Thank you to all!

Welcome aboard everyone! I hope you find the help and support here that you need. It's a nice place.

Hmmmm......well, right now I just started shots that are supposed to mimic full menopause due to endometriosis. I will let everyone know if I start to head on the upswing. I do feel I am starting (barely, but that counts lol) to gain some forward momentum. Maybe it will get better and better!

I also get it off and on with the room spinning stuff. Like Claired stated, there are certain positional exercises that can be done if some of the crystals in the canal get displaced. I also have a dehiscence in the bones which can be a problem. This can only be seen by a ct scan and by a radiologist who will take a real good looksie. Just talking about it makes me naseated!

Hiya Christina! Welcome aboard! Sounds like you have been through a lot and you are right....what we say to ourselves everyday does make a difference. For instance, through this illness, I am becoming a professional patience finder, a professional compassion archeologist and a professional assertiveness compass builder. Lol! Many well wishes coming your way!

Yes, I think so Katybug. I am rather embarrassed as I used to get all A's in school and I knew this stuff and I read it now and it won't sink in anymore. I would say my iq is dropping through all this. I get symptoms of hypo perfusion (leg ataxia for example) when I have been upright for awhile (sitting or standing) but there is not noted blockage in the carotids. I have slurred my words at times. I would actually say I fit the MSA category more except for the fact that if the ataxia, swallowing difficulties, bladder and bowel stuff is come and go, then it wouldn't fit, right? I now use a cane full time. I do see a new neurologist next week. She is supposed to be real nice. It certainly is a journey, isn't it? Lol.

Ahhhh...thank you Katybug! I will check it out.

Hello again everyone. I am getting confused as I seem to have some central nervous system symptoms and I have already been diagnosed with Pots and autonomic neuropathy. I apologize but I'm getting confused. I'd rather not mention the central symptoms in detail (tmi) but is this what everyone goes through also? The autonomic nervous system is not part of the central nervous system, right? I tried to look this up on past forums but can't find anything specific to this. Thanks to anyone that can shed some light! I actually learned this in college but with my current brain fog, I guess I'm just not getting a clear picture! ?

Hi Goodnuff77. I am glad you reached out for support. I do not have children (just a rather large dog) but I do know that many of the members also struggle with trying to spend time with their children and taking care of themselves at the same time. I can only imagine the difficulty. I do understand how doctors appts. Seem to take the place of your job as I am also on disability right now. Trying to build a team of medical professionals that you trust and you feel have your best interest in mind seems to be a struggle due to the still "newness" of the diagnosis (relatively new I mean). The information is getting out there but I found my "team" through the Cleveland clinic. I hope you do take GJenson and Katie's suggestions up on Pm ing. They are awesome! I am glad you are back on the forum. It has really been a lifesaver for me.

Srb, hello again! Just a quick note to let you know that when I tried cutting my Midodrine in half before (I was taking 7.5 before so I was taking one 5 mg. and trying to cut another one in half), the pill kind of fell apart when I tried to cut it in half. I am on 10 mg. now so I don't need to do that anymore. I could usually keep one half together and the other half turned into tiny pieces. I know you need it badly so it can be done but I just thought I would share that so you are not suprised if it happens to you also. My pill cutter is fairly small so it may have been easier with a larger one? Good luck!

Hi Parages! Welcome! Sorry to hear of your discomfort. I had horrible tightness around the bottom of my rib cage but it turned out I have a small incisional hernia there so it may be very different from what you are experiencing. I have also had muscle spasms in the past. I have not had a full spinal MRI and in my case, I don't think they suspect a compression. I hope others chime in for you as I know some folks on here have experienced spinal issues as well. I just wanted to say hello and welcome and hang in there. Gathering information can be overwhelming but there is a lot of support here. You are not alone!

Yes, Green85, this has been a new road for many of us to navigate. It does have its challenges to be sure! And, for many docs, this is also a new road! (Unfortunately, some docs don't realize this road exists...snicker snicker snort snort) I hope you get your results so you can take a looksie at them with your own eyes. Interestingly, there was a Dr. House episode where a guy kept passing out, blood pressure problems, etc. and it turned out is was basically POTS caused by a chiari malformation. Prayers sent your way for hope and healing.

GJenson, I sure hope this all gets sorted out for you. I certainly understand the effort of trying to 'catch it' when it's happening. It would be great if you could get a full cardiac work up . Not sure what that would entail exactly but if I were in your shoes, I would certainly want every branch and channel and chamber and highway checked out fully! We all know you are good hearted so I hope you get a full "good hearted" check up! God bless.

As far as I know, the increase of heart rate when going from supine to standing of more than 30 points indicates a Pots diagnosis. So, going from 49 to 90 would be a positive TTT? Anybody else have input on this? Obviously, I am not a doc and certainly can't say anything for sure. I also know that I was told to remain very still and only speak when I am to report a symptom or problem. I feel for you as I have often felt like I am misunderstood. It can be extremely frustrating. Please hang in there. When I started my journey, I was looking for a Sherlock Holmes doctor. It turned out, I had to be my own Sherlock and find the right doctors that would listen and believe in me. It can be done and you will do it too. Even after a positive TTT a and a wonky EKG, my primary doc at the time became dismissive and told everyone I was just deconditioned. Had to fire her. It is a journey. Don't give up. Breathe and get your results and you can find great resources and support here. You are worth it. God Bless.

I also have those days. It is difficult to tell what it is exactly for me. I know I just got a hormone shot which increases Estrogen and then is supposed to shut the ol estrogen down after that and During the estrogen increase, I felt like a bear having a bad day for 2 or 3 days. I chose to shut myself off from the world for a few days and just keep to myself so I wouldn't snap at anyone. A good cry is always helpful for me on those days but sometimes it is stuck and won't come out. I need to watch a really sad movie or something to release the cry.! I also can get the agitation like Pooter 18 is speaking of where my nervous system just feels like it's on hyperdrive. Our bodies are complicated. I sure hope you feel better Artluver. I'm sure you will. Just hang in there!

Hello! I thank you so much for your service and your courage. I just wanted to say that my Dysautonomia also began with bladder issues. I was unaware of anything else, though, at that time. A few years later, I know that my nausea, vertigo, trouble standing, etc. began at a very stressful time in my life personally and I was also scheduled for a major surgery. I can't even imagine the amount of stress that you were under In Iraq! Plus, feeling the blast from a rocket attack must mean that your body was truly thrown for a loop even if you weren't knocked unconscious, right? I know that many folks on here also have Ehlers-Danlos (spelling?) with hyperflexia. I also have the major dry eyes thang too and went through a period of fecal incontinence which has since cleared up thank goodness. It sounds like you need a really good work up on so many levels. I pray you can get to Mayo as I know there are many good docs there who might be able to get to the bottom of this for you. And, lastly, I would love to see you kick a 40 yard field goal while sitting! Now that is awesome! You should get that on video! Woooohoooo!

Circuscat, my TTT a was not comfy but it really showed a lot. It got to the point where the nurses kept saying I could lay back down if I wanted and I told them I thought it was like a game show and I had to last as long as I could. Lol! It is important that you report to them your symptoms (dizzy, nausea, shaky, etc) as they come up. Interestingly, toward the end of my test, I started feeling really depressed. I later learned that my EKG was going rather wonky at that point). Who the heck knows what that was. Later on, the doc said my TTT a was rather impressive. I told him I enjoy impressing others in any way I can.