Hope

My thoughts and prayers are with you!

Actually, I see there is an Eeyore on here already, oh well!

I just had to whine to somebody today I was sitting up all night literally hugging my waste basket due to a bout of vertigo. Soooo, yuk! Not exactly sure what triggered it this time, it's either a virus that my extended family has been passing around or the shedding cottonwood trees. Either way I guess I'm planted until it passes. Not that I go very far anyway, but the thing with vertigo is it could last hours, days, weeks or even months. So here I sit on the couch...indefinitely. I guess I will see if I can at least crochet. Hope (who is not feeling so hopeful anymore, I might need to change my alias to maybe..."Eeyore")

Praying for you guys!

Well...I have had good luck with my beta blocker keeping my heart rate under 100, the trouble is, is that it may be knocking my already low blood pressure down further. In fact my cardiologist just took me off my beta blocker this week after two years to see if my blood pressure would come up. It does seem to help my blood pressure being off the beta blocker but my heart rate has been between 115 and 135 in the mornings all week and I feel yucky. I felt yucky before I stopped taking them also but my heart rate was lower. I don't know what the answer is. I hope it works for you without dropping your blood pressure. I'm surprised they are giving you a beta blocker when your heart rate isn't over 100. I have been told up to 100 can be normal. Maybe because the rise is so significant. My heart rate easily gets over 100, but I start out usually in the 90's. 62 to 95 obviously meets the 30 bpm criteria. Let us know how it goes!

Well that sounds encouraging about Dr. Grubb, although very sad about his and his wife's own medical issues! Thank you. After 3 days of no beta blocker, I don't think it's a good idea. My blood pressure is climbing slightly each day, that's good. But my heart rate is climbing right along with it. I took a half a beta blocker anyway this morning at 133bpm. I haven't even taken a shower yet. All I have done is gotten our breakfast and walk around the house a bit and I would like to do a little more than that today. Although it does feel good to have my systolic over 100! Heck, over 85 or 90 is good so 104 is good for me. My head feels much clearer. It's too bad I can't get a good balance between the two.

I think it's easy for my mind to go blank when there isn't enough circulation to my brain, which is often. And our illness is so complex, I find it hard to know where to start explaining it and then I can get blank or just really confused. I was at the doctor yesterday and I was having a hard time telling him why I am worse right now. You are not alone

I went to my cardiologist this morning for a recheck and he decided to stop my beta blocker to see if that improves my low blood pressure, going along with the thinking that the tachycardia is a reaction to the low bp. I'm game! He also wants me to go see Dr. Grubb. He mentioned it last time as an option, but was more direct about it this time. So I plan to call and get that ball rolling. I'm hoping I don't have to redo a bunch of tests, but I guess if I want progress I'm going to have to suck it up. I'm so fortunate to have been sent to this cardiologist. He really seems to care about what he does.

Thanks. You come up with some good stuff!

Sorry to hear that. That kind of stress doesn't help at all. Just remember, water seeks its own level. My husband suffers from chronic illness as much as me, not the same type, but he is equally miserable. Health compatibility can go a long way =) I hope you find peace soon.

Maybe fight or flight response? I was getting something that sounds similar 2 years ago. It was horrible. "Surges" would wake me up every morning at about 4:30am, then I would get horrible shakes for hours and then I would be completely worn out. My temp would be around 99 to 100. I didn't have a blood pressure monitor at that point because I hadn't yet been diagnosed with POTS and didn't know I had a blood pressure issue. I never did come across a doctor that understood what was going on let alone do something about it. My "then" primary care doctor told me I needed to see a psychiatrist to get better medication (I have now found a better primary). I started praying every morning while the surging was happening and it eased up and eventually went away. After researching what it could have been, it seems like my body was in fight or flight mode. My body had taken a hit from having a miscarriage, during the height of allergy season, and changing 40 something hormones. This was right before I was diagnosed with POTS. I noticed this didn't happen when I had an IV in me for some reason. If the IV was stopped the surges resumed. Weird. But that fight or flight mode can happen for whatever that body sees as an attack. Just an idea. I hope you find an answer soon!

Good perspective.

Functional limitations: I can only drive short distances on very "good" days. Most days I can't drive at all. Today I was feeling very closed in and drove to the mail box about 1/2 mile away and when I got home I climbed into bed for about 2 hours. I can only go down the basement stairs in the afternoon or evening because mornings I'm just too weak and usually I can only do the stairs once or twice in a day. I can't vacuum, or do any scrubbing, I now pay somebody that comes in to do these things for me. I can still load the dishwasher (my son empties if for me). I use a shower chair. I also have a new electric 2-wheel scooter for when I'm having a good day, I can take my son out for a bike ride. Although the last time I was out with him after 2 blocks I became very dizzy and weak and didn't feel real confident I would make it home before I crashed, but I did =) I haven't needed my walker for a while. I use my cane on and off as needed. If I needed to go someplace where I would have to walk any distance I would have to bring my wheel chair, with somebody to drive me to where ever it is I am going. One of my son's does the grocery shopping, I think you get the idea of my limitations. These vary of course. I seem to do better during the winter, actually taking trips to the library with my youngest son, or driving my self to Walgreen's and walking around for 20 minutes before I need to leave etc. But spring seems to bring on more limitations. After 2 years of being diagnosed with POTS, my husband is finally understanding my limitations. It might take your husband a while to adjust.

Just wondered do your eyes feel dry? My eyes get worse by the day. Very blurry. I'm always straining. It's been a year since I was at the eye doctor so I am getting ready to go again, but I am considering maybe seeing a different doctor. My eyes don't feel dry, I just feel like my vision in getting really bad pretty quick. I mentioned it to my primary, but she just said that I'm at the age when eyes get bad. I guess it could be. I also wondered if maybe my meds are changing my eyesight. I do notice though when I get an IV my eyesight improves greatly!

That's wonderful! Congratulations!!!

I had one done before I was debilitated. I was still working. I was having my heart checked due to chest pain and the ever annoying heart feeling like it's doing flip flops. They did not find anything too far out of the ordinary. I do remember them telling me that I had a slight increased risk of stroke, because of the way my heart beats can sometimes cause plaque to break off. But I didn't have plaque build up then, so I guess there was nothing to worry about. But I suppose if you have something there to see, it could be a good test.

Ya know, when I used to drive more I always had to have the window open or I would get disoriented pretty quick. Rain, shine, snow, or sleet, I had the window open. It felt like it grounded me somehow. It sounds like it could be along similar lines as covering your ear.

Nobody in my family has been diagnosed with Dys, but I can see people on both sides of my family that have similar symptoms.

Chaos's post could be me, except for the Saline injections. I haven't tried those. I take midodrine and a beta blocker and some days are better than others. But I can't seem to get back to my normal life after 2 years. I have had symptoms since I was a teen, but I've not been disabled until 2 years ago. I am definitely better than I was 2 years ago, but I can't work. I struggle to do things around the house. Even though my alias on here is "HOPE", I find myself getting depressed about my progress. I have to keep doing gratitude checks, because I am very grateful for not being bedridden as I was 2 years ago. It's a rare day when my blood pressure is anywhere near normal. Most days I start out around 78/56 and my heart rate is usually 90 to 120 and goes up quickly and my blood pressure will continue to go south if I don't get my meds in quick. (I should say this goes in waves, because there are some stretches of time that I barely need meds, but my symptoms aren't much improved) Fatigue is my middle name. I've learned from people on here to concentrate on what I can do, and not what I can't. It's hard though. It takes mental discipline to stay focused on the positive, and that can be so difficult when your brain fog is so bad that you can't get 2 brain cells to rub together! At least I can think a little straighter in the evening. I would have great difficulty typing this in the morning. I guess other than my meds, a nap is a MUST! I can't get through any day without a nap. If you find something that works, let us know.

Are you sleeping with the windows open? I get bad if the windows are open all night and it's always worse in the wee hours of the morning. I try not to open the windows until at least noon or after. And if I have to go out I use a face mask when the allergens are running high.

I don't do well with an epi. This year I have had a crown done, and a wisdom tooth removed with a local and no epi. The crown was painful, the nerve wouldn't numb, but the wisdom tooth went very smoothly.

From time to time I get a prickly feeling on my head that is annoying and hangs around for about a day and disappears again. I can't attribute it to anything.

Ugg! How frustrating! It seems like a lot of people here get good results from the mayo clinic, or Cleveland clinic etc. I don't know what is in Florida. I haven't come up with the strength, energy, and courage to do so myself, but my cardiologist said if I wanted a more definite diagnosis I need to head to Toledo to see Dr. Grubb. He said it takes a year to get in and see him though. And for me Toledo is only really about 2 hours away, but I haven't yet made an appointment. Each doctor just has their limits on what they can do like everyone else so it's important if your insurance allows to keep searching for answers. I hope you find some answers!

I have looked into it. I bought an Adrenal Fatigue book before I was diagnosed with POTS. The symptoms are much like CFS and POTS. Mycortisol testing was barely inside the markers and I think I was tested too late in the day. From what I was told it was suppose to be in the wee hours of the morning and we were pushing 9:30am, so did that change my outcome? I don't know. Either way, no doctor I have talked to will even have a conversation about Adrenal Fatigue. I have followed the book quite a bit in order to get myself to where I am now, but I take whatever tid bits I can get from anywhere if they sound applicable. I lived on the "recovery soup" from that book for the better part of the past 1 1/2 years. I changed it up a little to suit my needs. One important thing it said was having fruit and yogurt for breakfast will put an adrenal fatigued person on the floor (and I was on the floor a lot at that point), and just changing that simple part of my diet to eat my fruit or drink my fruit juice in the afternoon (and I don't eat yogurt any more, although I'm looking for Amande around here) was significant! So that's all I have on that. I can't say that is my problem, but I've gotten some great tips out of it!

Has your doctor run a lot of blood tests? Like for Lyme, checked your ANA etc for any autoimmune causes. Sorry, bad brain fog today. I'm having a hard time deciding if what I'm saying is making sense. Your list is very similar to mine, minus about 3 and then I have some to add. =) You're right, those symptoms can come from so many different things. They can't determine my underlying cause (although I'm pretty sure I know what it is) and I have had just about every blood test under the sun, so I know there's a lot they can check for. Just curious, did your symptoms come on gradually or did you get hit suddenly?