trice125

I did not find Cleveland Clinic to be helpful to me but others have.

I was able to graduate from college and work for a year and a half before I couldn't work anymore.

I take magnesium daily for my IBS and my vitamin d and potassium levels are at a correct level in my blood already. I have Valerian and passion flower on my list as possible things to try in the future.

The worse of my symptoms includes fatigue, dizziness, general weakness and muscle tension, chronic headaches, exercise intolerance and fatigue, brain fog, chest and head tightness/pressure, physical anxiety, insomnia along with not being able to get into a deep sleep (plus lack of deep sleep, heat and stress are my two biggest triggers), lack of temperature regulation (if I get the least bit hot it can also be another trigger and only adds to my exercise intolerance), extreme nausea/abdominal pain/sometimes vomiting and lack of appetite that comes from gastroparesis, IBS, acid reflux, overactive bladder, tachycardia, etc. I feel like I could go on and on. I was diagnosed with hypovolemia POTs at the Cleveland Clinic in April. They suggested salt loading which I have been doing since first going to the Clinic in December but it doesn't seem to make a difference besides making me gain a lot of weight (30 pounds since December). Plus gatorade, NUNN tablets, and salt tablets all made me vomit or get very nauseous so I've had to switch to just adding as much salt to my food as possible. Dr. Jaeger didn't seem to listen to me that my posture doesn't matter and exercise is almost impossible to my temperature regulation issues plus since we went for my first appointment there the week before Christmas I couldn't get an appointment with the neurologist there that's in this specialty. Dr. Jaeger also seemed to be focused on doing Hemodynamics testing even though we tried to do it twice and they were unable to get a big enough IV started either time. My local doctors don't believe that tells the whole story though plus for some reason all of the autonomic testing was done with me on medication so the results don't totally tell the story. I currently have a local electrophysiologist and while he tries to be helpful he's run out of ideas and I also have a great primary care doctor that tries to help she knows this is beyond her knowledge. I'm seeing a local neurologist that specializes in this area here in a couple weeks so I'm hoping they are more helpful than Cleveland Clinic. I don't drink at all, actually got worse when I went gluten free for 6 months, and either haven't had any reaction or a bad reaction to most medications that are used to treat POTs. I'm currently on medication to treat every organ system in my body because they are all affected. I also freeze meals like you do Katybug which do come in handy quite often but since my appetite can be very low sometimes especially when my symptoms flare up that I end up eating whatever I have an appetite for. ​I think I have covered it all and I hope it makes sense, the brain fog isn't making this easy this morning. I appreciate any and all suggestions.

I am interested in what others on this board use for treatment/comfort measures and techniques. My symptoms have been quite severe here lately and my normal tricks/techniques aren't helping at all. I'm just looking for some new ideas so I can get out of the Groundhog's Day movie if you know what I mean.

I've been salt/fluid loading and on meds for autonomic dysfunction since December and since then I've gained thirty pounds which makes me officially 40 pounds over weight. Currently my symptoms are too flared up for me to exercise at all and my GI symptoms are also flared up so I'm not even eating very much but I'm continuing to gain weight. Has anyone else experienced this or similar symptoms?

I sometimes have to set an alarm to go off like every 5 minutes or so and then every time the alarm goes off I make myself take a small sip of water, gatorade, etc. Phenergan is a good friend of mine in several different forms (pill, gel, and suppositories). I also use over the counter chewable tablets called Nauzene and bracelets that work on acupuncture points on the wrist called Psi Bands.

I do when I actually get into a deep sleep.

Has anyone on this board seen Dr. Steven J. Shook at the Cleveland Clinic? I was told that he is a neurologist there that sees patients with autonomic dysfunction. I haven't been able to find any info about him on this board or even much online but his schedule is the only one that would line up with Dr. Jaeger's schedule. I saw a different neurologist there during my first visit but since I had to see whoever had an opening which ended up being one that specialized in treating MD and MS so they weren't much help. Any input would be appreciated.

I helped me sleep but didn't help with anything else. It was worth it though since lack of sleep is my number one trigger.

I also have GP and have weight gain instead of weight loss but I have more nausea and pain with it instead of a lot of vomiting.

It caused me to have stroke like symptoms while in the hospital recovering from surgery!

Yes! Actually I only had GI issues for six years before all of my other symptoms started appearing. I have gastroparesis, reflux, severe abdominal pain, chronic constipation, etc.

Has anyone else been really sick this winter/spring? I'm hoping not but then again if I'm not alone it might make me feel a little better. I first got the flu, then bronchitis, then pneumonia and now SHINGLES and of course my dysautonomia symptoms don't go away when I have other illnesses going on if anything they get worse.

I'm interested in how he follows up with you guys. Originally I was supposed to go back for one more test and a follow up appointment with him at the end of February (I saw him for testing and my first visit in the week before Christmas) but I got the flu so it was push backed because of that until tomorrow. Then his office changed it again to where it isn't until the middle of June because he's going to be at a conference on that date and then he's on hospital duty for most of the month of May. Until then though we have his report that most of my doctors here don't understand or know what to do with.

I always crash if I try to do anything that doesn't calm down my body like yoga, Pilates, etc. The only exception for me is walking within limits.

I have experience with chronic headaches but not with nerve blocks for it. I am currently on flexeril but it doesn't really help. I saw a neurologist a couple months ago and he said he wanted to try botox and/or nerve blocks as soon as he could get insurance approval for them but I haven't heard anything back about it though. I'm interested in any information you learn from others on this site.

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I passed but it was abnormal because my catecholamines after being standing for 30 minutes were very high.

I went to the Cleveland Clinic the week before Christmas for an appointment with Dr. Jaeger and three days of testing. I was orginally supposed to go back in the middle of February for hemodynamics testings along with a follow up appt with Dr. Jaeger but I've been fighting the flu and bronchitis the last two months so my appointment has been pushed back to the end of April to give me enough time to get over all of this nastiness. While I'm there this time though I am scheduled to see a CC neurologist Dr. Steven Shook but I haven't been able to find much info about others experiences with this doctor. Also, during my tilt table test done at the CC in December my Catecholamines after being standing for 30 minutes were very high. I asked my local doctors and have tried to research it online but I haven't been able to find anything?

I had a TTT test at the Cleveland Clinic in December and was told that as long as I still have symptoms on medications it makes no difference on the test results whether you are on them or not.

I would bring any test results with you along with a list of medications you have tried in the past for it and how they affected you. Other than that I don't have any other suggestions since I don't really know what questions to ask either. I believe the biggest thing is to make sure this primary care doctor will actually listen to and support you. I don't like change at all but I finally changed PCPs almost 2 years ago after being with my previous one for 14 years and you wouldn't believe the difference. I wish I had switched years ago now. I'm sorry if this isn't much help but let me know how it goes.

I completely understand. I feel the exact same way. I seems that the only people I really see is doctors, lab workers, pharmacy staff, and my family. I'm 26 and still live at home because I can't afford to not be. That makes it more difficult to relate to any of my friends though since most of them have their own homes or apartments, have good jobs, are in serious relationships or are already married, have kids or planning on having kids but because of this stupid medical problem I am not doing any of that. If you want to talk more about this with me since it seems like we can relate to each other quite well shoot me an email.

Joann- who are you seeing in Cleveland and when will you be there? I went to see Dr. Jaeger and to have testing there in December and will be going back for follow up in the middle of April.

My GYN doc told me that IUDs normally work well for people who have heavy periods but she does not suggest them at all when other systems are involved such as with most of the symptoms that people on this board have. I have a lot of GI problems so she highly suggested the nuvaring which I love most of the time and hate when I can't get it to stay where it's supposed to. It has greatly lightened and regulated my period but my symptoms do still flair up during my period, just not as bad as they used to.