Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by Joann

  1. Bebe, I think the one POTS doctor that has Pots, the one on the Changes video is in Florida. Randy Thompson? Also, Hope, Dr. Grubb's wait list is about a year long. His assistant Beverly's wait list is around 7-8 months. I have been told that Beverly has been with him for years and is very good, and consults with Dr. Grubb on your case. Once you are a patient follow up appointments are not as long a wait. Now, this is what i have been told. i am on the wait list for Beverly and I don't know yet how long it will be. They schedule one month at a time and they are on July/August right now. So I am figuring it won't be til fall. I wish I had called them in the beginning. Remember you can always cancel an appt. To get on the list, you have to first fax/send your tests you have already had done. I faxed what i thought was important and will bring the rest. Also if you are close enough they note it and will put you on the cancellation list, so if there is an opening they will call you. I am about an hour a way, but they also they have very few cancellations. Which makes sense, waiting that long who would cancel? The very few that get better on their own, or those that find out they have something else in the meantime. I have been to CC recently and am working with their doctors, the only thing is so far they have not been able to help me. I think because I do not have the "normal" POTS. I think hype pots is a possibility and it doesn't seem like they deal with this as much. But I am still working with them and hopeful they will find out at least some of my problems. i have some friends that I have met through this site and others and most have had very positive results at CC. I had one friend who was an exception, but it may have just been that one doctor that she saw.
  2. Carrie, I have often felt that was the case. One of the things I have wondered is if my system is over-reactive. I am drinking the water and gatorade but honestly i don't think mine has anything to do with blood volume or the vessels in the legs. I did have a volume test and it was pretty close to normal. I am still drinking a lot figure it can't hurt, but I do not salt load, since I am having high blood pressure problems.
  3. Julie, How where you diagnosed with this?
  4. Margibee, there are some with pheo that don't have high bp, but not very often. That is usually the biggest factor. I do get really high bp spikes. Like Alex, I have been to ER many times because of it. Unlike Alex and Bebe my high bp started prior to the bp meds, although I was on a ppi for supposed stomach issues. My symptoms and bp started rising and got really bad over a 9 month period, until I was bedridden and couldn't l even lift my head without my bp going up to 180/116. I am on two medications that are for pheos. I was doing pretty good, but recently I have had a bad spiral and it is spiking again quite bad, even on the meds. But one of the docs at CC felt that I should try to get off one of the bp meds. Big mistake, my bp spiked to 170/100 within 7 hours of missing that dose. They may be mad at me but I went back on the meds. My MIBG was somewhat indicative of a pheo, then they did a ct scan and didn't think it was. The doctors have told me that sometimes it takes years to find them. So I often wonder if I do have it. Especially since I have problems pain and high bp when i bend, do stairs or sit sometimes. So I wonder if it is being pressed and causing it. But then again it just could be some other crazy thing. It is always something to look at but, most will find they don't have it. Oh and there is a site/forum that gives personal accounts from people. Just google the entire name of pheo (not spelling it here) and it will pop up.
  5. My doctors have told me you can have them for years before they are detected. They are can be difficult to find. I think if they aren't really big and not in a spot where they are moved/touched to excrete the hormones/adreniline/whatever it is that they excrete, they will not show as many symptoms. However, others have very dramatic symptoms and you can have very high bp with these. There are several tests, a blood test, urine test, ct scan, mibg scan. They are really rare though. I have also been told that hyper pots can present just like a pheo. I have been told they are pretty sure I do not have one, after testing, although my MIBG had uptake in two places. But they also said it is still possible. They have me on two medications that suppress pheos, but aren't necessarily good for hyper pots. The docs at CC want me to go off one of them, I tried yesterday with some pretty disastrous results. I am going to tell them I just can't experience that again, at least not while I am in the middle of this bad patch. I am thinking I may try and get them to agree to try the medications that are suggested for hyper pots. I think many people on this site have been tested for pheos and ended up having hyper pots, or some pots that present as hyper. I am sure some of the more knowledgeable posters will explain more. Plus there are some posts on this. Hope you are doing better
  6. My tests last year had high norepinephrine and high dopamine, normal epinephrine. Not sure what they are now. Doctors haven't officially said hyper pots, but I think that is what it is leading too. I am on the wait list for Dr. Grubb's office and I think I will finally get some answers. I will be interested to see what you find out.
  7. Well, I am in the middle( I would like to think at the end of, actually) of a flare. It is where the poopiness you felt is tons worse. I am unable to do much of anything. I was driving but now I cannot do this Some times all I can do is lie down and I still feel terrible. My blood pressure and heart rate are higher during the entire flare, but at times I have huge jumps. I feel like I am having a heart attack, or something similar. I have ended up in the ER twice in the past weeks with extremely high blood pressure and heart rate increased, feeling awful. I cannot lift anything or bend. Food is the enemy, I want to eat but often can't. What I eat does not want to digest correctly. All of your symptoms are worse and you get additional symptoms that worry you (extreme pain below rib, with any movement is new, one eye becoming completely blood shot and then clearing and reappearing is one that seems to only happen bad during flares). Basically, life kind of stops and you just try to survive the moment and hope it will pass. Oh and there is usually no one who can tell you what to do. You know you can't let yourself get deconditioned, but yet your body isn't able to do anything. Well, thats how I see flares.
  8. Tachy, Just wanted to say, I also know how you feel when you feel so awful you want to go to ER, but yet know they will probably do nothing and family says wait it out. I also debated about going yesterday and today and am trying to tough it out til tomorrow. I will then call the doctor who will probably tell me that she can't find out what is wrong. I went an entire year without making a trip to ER, but the past couple weeks I have been twice, both times the doctors were sympathetic but said it was beyond emergency scope. So for me, I will try not to go unless I am pretty much dying. If you really feel you need to you should go to ER, but just wanted to let you know you are not alone. Plus if its a new symptoms unlike one you have had before, it certainly would make sense to have it checked out. Just an opinion, since I don't have any medical training.. I hope you are feeling better soon.
  9. Thanks for posting this video, it gave me a better understanding of what may be going on with me. I really think you did a great and extensive job, it must have taken you a while. I have to admit I still need to learn more about this but you really made this more understandable. I would like to look into some of Ramakentesh's remarks, but I do have a difficult time understanding a lot of it You gave me some information on different drugs that may help me. You seem to think clondine may not help hyper pots. I have had a few people who have have told me that this is what they found helped them the most. For a person with an increase in blood pressure with standing, I thought the clonodine or the non selective beta may help me. I unfortunately cannot function without some medication, but the medication I am on is not working correctly. I do live in Michigan also, and the cold bothers me, so far I have not had a problem with heat.
  10. No contrast and yes it was a new machine. It is possible that that contributed to it. But i do think the lying flat did too. I am going thru a tough time right now, and think that now my meds are contributing to the problems. Multiple problems at the same time, ain't life grand. I actually woke up today and was feeling somewhat better.ISo I think whatever the test triggered is getting somewhat better, But I took my meds and within an hour, hour and half of the last medication, I am having crazy symptoms again. So instead of feeling better taking the meds I feel worse. I should get the results sometime today. Plus I am going back to a local cardiologist today and they want to talk to me about my medications. I was doing so good for a while I actually thought I might get my life back to a somewhat normal life. I now am just hoping for my "new normal" to come back and just be happy with that.
  11. Could lying flat be a trigger for bad flares? I have posted recently how I went to the Cleveland Clinic for testing about a month ago and how I got home and became feeling really bad again. I knew something from the trip was causing it. I just didn't know what - blood draw, the contrast, the fasting, etc. Now I had several tests where I had to lie flat for long periods of time. Yesterday I went or an MRA of my neck and head. I had to lie flat in the machine for about 45 minutes. When I sat and then stood up. I felt AWFUL. I knew my blood pressure was sky rocketing. I actually was a little wobbly on my feet and my head and chest felt terrible. I wobbled my way out of there, the tech saying of some people feel off for a few minutes. When I got home I walked and felt a little better. But every time I sat down and then had to get up I began to feel incredibly awful and blood pressure began to get higher and higher. In fact, I was beginning to have problems even sitting. If I managed to stay standing and walked, the pain and blood pressure would subside, but of course, one cannot walk forever. By night time I was in bed and unable to get up to even go to the bathroom without super high blood pressure (sometimes high heart rate also) and incredible pain in my head, neck, back and chest. It would take over a half hour for it to slowly subside and then shaking/shivering started. Does anyone else have this happen and understand why and what is doing this. Today I am on my medications and told I would have to wait til tomorrow for the results of the MRA. If I feel worse go to ER. I have felt a little better. I was able to get up and go to the rooms in the house with a less drastic response, but I am sure night will be a treat again. I do have an appointment with a local cardiologist tomorrow and going to ask if there is a medication to take during the flares. But could lying flat cause something. I am actually hoping that the MRA will show something messed up and causing it, but I know that is a long shot and probably way to easy.In my mind it would explain why stairs and bending and change of position cause these responses, but I know it is probably wishful thinking. Most likely this is some odd dysautonomia thing and I would appreciate any thoughts
  12. I have I think a similar feeling. I never thought of it as strangling though. I get the intense pressure in head and neck. Especially the back of head and neck, and very top of head. At its worst, I will get pressure that I describe as if my head is being pumped up with a bicycle pump. Not sure what it is, but I am going for an MRI/MRA of my head and neck today. They feel this symptom is happening so often they want to rule out any problems with the blood vessels there I also know that I have a bad neck so this my contribute to whatever it is.
  13. I have a friend who has fibro, she says I should check into it, But right now, I am looking into some neck/head issues, and am hoping this may give me some answers. Also am rechecking my vitamins levels, wondering if that is making it worse also! Thanks for the suggestions.
  14. Very interesting. I had low vitamin b, and started getting shots last fall. I was getting them every month, but missed Aprils and haven't gotten my May yet. Mid April I went to Cleveland Clinic for testing and came back home and began to feel bad again. I called my primary doctor to recheck my vitamin b and d again. They tested and won't give me a shot until the results are in. I am wondering if this is contributing to my terrible flare. It is a long shot, but I will let you know what happens, with my levels and shot. Until I get the shot I am attempting to take some b12 gummies, just not sure if I will be able to absorb it, since my digestive system is having major problems.
  15. Doe anyone know why this happens? When I am feeling bad, any pressure causes problems, bra, tight socks, putting a hoodie on my head, forget a compression shirt. I always thought I was going crazy. It was like the pressure of anything on my body would cause me to feel bad. Now before all of this I loved to have tight stuff on it actually would feel good, to wear the tight work out clothes or under armour. I went months unable to wear a bra, this had gone a way and now it is starting again.
  16. The last 18 months I have had many flares, some aren't as long or as bad as others. The longer the stay the worse they get. I was bedridden (but I still managed to get to bathroom, but it was difficult) several times, the other times I am more home bound. Able to do some small things bed to couch to bathroom to kitchen. I am currently in a one of my longest flares in a long time 3 weeks and going. I went for testing and crashed that very night. Testing so far has given me no answers Once I am unable to eat it is a downward spiral and that is starting on this flare. I have two more tests and am hoping something shows. Do you have a doctor that understands this? Have they given you any suggestions?
  17. Just wanted to say I am not on Florinef, but my hair color is not holding anymore either. Prior to this I could go close to 8 weeks, now I am seeing gray seeping thru almost immediately.
  18. Alex -I was tested for this last year. In fact, my numbers came back high, but not extremely high think it was around 850. But they did an MIBG scan and the technicians told me they thought I would have my answer. However, the results were indeterminate. They showed increased uptake around the adrenals but a CT didn't see anything. Later I was given a blood test that said no. But I have wondered because I have heard that if you are not flaring the blood and urine won't show. I have heard hyper pots can be similar to this also. So far, I have not seen anyone who seems to be very knowledgeable about hyper pots. They all want to treat me as if I have regular pots. I have also had a test that came back odd for carcinoid tumor, but then I was told the next test came out fine. Again, I wonder if you have to be in a flare for this to show? Thanks for the thought, I will ask the doctor if this is possible. The reason I am on the alpha and beta blocker I am on is because the cardiologist I saw in the hospital put me on the ones that would best suppress a pheo tumor. Now all the other doctors want me off the alpha, but I really feel this one has been helping me. I am thinking about trying to take a 1/4 of a tablet in the morning instead of 1/2 and see if I feel any better on less of it? I know I can't just stop beta blockers as it is dangerous for rebound heart attacks and strokes! The CC doctors seem to rule out a possible dissection of a blood vessel in head or neck, because I use to have my neck manipulated at the chiropractor and actually had this done the morning I had my first episode.
  19. Susanhs, just wanted to say you have a great attitude. Living moment to moment. I am having problems with my attitude and dealing with these symptoms. I am sure that helps you.
  20. I wanted to say sorry, if this sounds too much like a diary, I will try not to do that. I know that is not what this forum is for. I guess today I just kind of freaked out and needed some reassurance and advice so I kind of went on and on.
  21. Well after taking the metroprol I began to feel really bad within a half hour. I know that seems quick, but my bp was high. So I broke down and took the other 1/2 of the alpha, because I was feeling worse and a lot quicker than I had in past days. Honestly I hadn't felt this bad in a very long time. Relax 86 -They did take a bit of blood. Especially for that one volume test. I think they took 5 viaals for that and 2 for testing. I am also wondering if the radioactive dye did something. They say people do not have reactions to it. But last year I had a MIBG with this chemical and I had an awful flare a few days later, that got extremely bad and lasted about 3 weeks. I never thought it was from that, but now I am wondering. The timing is making me think my medicine is not working. I am getting worse 1 to 2 hours after taking my medicine. My bp is going up after this instead of down, I feel awful, sick to my stomach, head feels like it weights tons, and chest feels heavy. When I walk slowly, I feel a tiny bit better, but as soon as I stop feel terrible again. I broke down and called my local cardiologist (electro whatever she is). I don't know what they will suggest, but I really don't know where else to go. My primary has said she doesn't know what to do the last time I had problems. And the Cleveland Clinic doctors, well one is impossible to see and the other has said, she has only seen me once, so she can't really tell me. Basically, she feels she can't help me until the testing is completed, which is a MRA/MRI of my head and a month long heart monitor, so until then I am on my own, or the ER. I am trying to stay calm, I have had some times where I feel better, that is why I am thinking the medicine may be adding to the problems. But I also worry there is something wrong with my cardiovascular system. Sorry I know you have all been there before. This is kind of like it was last year, but yet it is different. I seem to be worse when I am sitting down (at times) and the change from sitting to standing and vice versa, it makes no sense. Sitting here typing this my head and stomach are beginning to hurt. I know it is something physical, but at the same time I start to wonder if I am going crazy also. Sorry again, I am just so scared, frustrated and confused.
  22. Well I am on a heart monitor right now. Now the doctor emailed me that I should continue blood pressure medications while on it. But I didn't get that email until afer II did what they told me on the prior email. I took 1/2 of my alpha blocker this morning, instead of a whole one. I figured I would be able to tell rather quickly whether it was helping or hurting. If my bp rises and my symptoms are worse, I will take the additional 1/2 quickly. They feel I should stay on the beta.I have been told by several that some other beta blockers may work better. I am just trying my best to get out of this scary flare, I hate that the focus is on the medications when they still don't even know what is wrong with me. I can take my pick of diagnosis, one is POTS, one is possible hyper POTS, and there are many others. Naomi- I am fearful of getting off and getting on medications. I have been on this combination for a year now. I am also fearful of how bad i feel also. Last year I went for months without any help and barely able to even get from bed to couch. I ended up in the hospital for 4 days and since then I have fighting to get better. I had finally thought I was close to getting to a functional level and now this. So I am battling this fear, but it is very difficult. As many probably experience, I feel like I have no one to go to for help. So I just try to hope I will turn the corner on my own again.
  23. Maybe it is something environmental that is causing it, so it would then be possible to cause it in those around you?
  24. Some of the people on this site may be able to tell you if this is some mast cell thing or neuropathy. I just wanted to say I did have this happen before. I used to have both ears get that hot feeling for no reason. It would happen off and on. I never got any answers except that it could be because of anxiety or stress. I am wondering if it was a deficiency in my body, I had lost a lot of weight and was not feeling well overall.
  25. Bebe, Sorry to hear this about your daughter. But her doctor sounds awesome and sounds like they are going to get to the bottom of it. Hugs for both of you.
  • Create New...