iheartcats

Well. At least you didn't turn into an eggplant? I need to start exercising and boy, am I not looking forward to it but it has to be done.

I am on Propranolol, too, and the positives outweigh the negatives. My brain fog doesn't seem that much worse (I take 20mg 2-3 times a day...what about you guys)? I would say maybe 5-10% worse, on average? I read some side effects go away as your body adjusts, so maybe I'm adjusting to it. Brain fog was never my worst POTS symptom, but still there. I used to have excellent memory. Now it's ok to good. Frustrating for me though. My memory was something I took for granted back in the day! I think overall it affects my short term memory. I take Ambien once in a while and it never affects my memory (does for some people, at least temporarily). So I can see BBs probably bothering some a lot worse than others, especially because us POTS folks vary so much and medications can act differently.

My sister is showing signs of POTS (she's three years younger than myself). I threw a HR monitor on her at the holidays and had her sit down (80s) and stand up for a minute (115-120). She takes her rate randomly now and it's high standing. Plus fatigue. She has had a lot of stress in the last couple of years. My mother has had symptoms on and off for many, many years but won't go to the doctor. I know she's had stressful life events, too. I guess we're all 'functioning'...I have to take a crapload of meds to function though, but we're functioning. So I just have a feeling there is some genetic trigger they haven't found. I hope they do!

I take Midodrine & Inderal (BB) about 30 minutes before I wake up when I can manage. It does make a big difference for me...I get settled much more quickly then without them.

I sometimes wonder if a lot of us are all predisposed to POTS genetically and something 'turns it on' - I think there has to be a reason some people get it and others don't have illness/trauma. Anyway.... Mine really kicked in the summer of 2007. In February 2007 I had the *worst flu* I ever had. I was at work and two hours later sick beyond belief and had to go home. I couldn't even think and just felt so sick I couldn't stand it. On the way home, I saw a guy get hit by a car and fly through the air and had to call 911. I was so ill they got my number and sent me on my way. There was nothing else I could do at that point. I was so sick and so traumatized I went home and went to bed. POTS symptoms came shortly after and worsened by summer. I think it's a bit weird this would have a connection (Flu + seeing the accident = POTS Trigger) but I guess weirder things have happened.

I think the Midwest in general is hard on POTS. The economy isn't so great...but I cannot take another winter so I'm moving to the Bay. Things have to look up sometime, I say! This winter was so horrible on me. I thought my first summer with POTS was bad but then came the first FULL (and harsh winter). No fun. Whatsoever. I'll let you guys know...I'll be out there in a few weeks and can't wait. We are driving so I'm interested to see how I do at higher elevations. I hope it at least doesn't bother me! San Diego is fabulous, too. Lovely city and weather.

I recently started a BB, Inderal, and am now taking it twice daily at 20mg. This is a very low dose, per my doctor, but we want the lowest dose that works. I'm still fatigued, but more able to do activities. I was worried about my BP getting too low so I'm still on Midodrine (10mg AM, 5mg Lunch, 5mg PM if needed). It sounds a bit crazy to treat the tachy with a BB and BP with Midodrine, but it IS helping. I know from others this is not unheard of in the POTS world. I guess at this point I have to accept being able to function better, and the BB seems to be helping me do that. My rate would get crazy standing, 140 and could go to 170s and 180s walking on stairs. I got tired of walking around with a rate of 130-150. BBs seem to knock it to 90-115 which is much more tolerable. I think with Midodrine I'm still getting enough circulation. I too hope for a cure/healing. If there's something wrong with receptors, there might be a chance they can eventually heal. One can hope!

I hadn't eaten anything a while, I'm taking my Zyrtec + Zantac, etc. I'm away from any major allergens. I was fine all morning. Then. I got on a very stressful call with my cell phone company (I know,I know). They messed up my whole account, took an hour and a half to resolve, I'm at work, they dropped my call in the middle, etc. I broke out in hot, itchy hives all over my chest. They've calmed down now (it's about an hour later)...but I'm 99.9% sure it was anxiety-related. I vaguely remember having these once a blue moon pre-POTS, but now seem to get them more than before with POTS. Are we just more SENSITIVE? Does anyone else experience this? It's frustrating and a bit embarassing. I mean, I was upset to tears and very stressed and whammo, HIVES. Thanks for listening. It's so frustrating!

I am actually a little better on the Mestinon today. I'm very tired, though, but I think that's actually from my new IUD (and 'issues' that go along with going off the pill). I guess I'll have a better feel by the end of the week if Mestinon is doing anything or not. I just wonder how it's supposed to make me feel better. I don't even know what to look for... LOL All these meds are driving me crazy. I think for POTS with severe/moderate muscle weakness it's probably a good thing. I have more fatigue than overall muscle weakness so maybe I won't see a huge improvement.

And any help on this question --- I've been in the bathroom for "#2" a few times today. Please tell me this goes away! My stomach does not appreciate the Mestinon. I am eating while taking it - but it seems everything I eat goes 'away' and that's not good. From what I understand this should improve...but how long? As for the kidney disease...I'm on a Beta Blocker and have had asthma (mild)...and it's contradicted but has to be monitored. I'd talk to the pharmacist but maybe it's something that just has to be closely monitored, too. Your doctor does know about your kidney issues? My doctor said 60mg three times a day is a 'small dose' in reality. A lot of people with MG who take it use a lot more. Good luck, and I think it's worth a try IF your pharmacist and doctor say it's ok. I was very afraid, but I am ok and adjusting and hoping it helps. I was told if it doesn't help, I stop taking it by my doctor. So I just hope it helps and will go from there.

I'm moving in a couple weeks, partly because of climate, to the Bay Area. Chicago was too rough on me the last 18 months with POTS. The weather changes/variations, damp, freezing cold winters, hot muggy summers = horrible. I'll let you know - PM me so I can update you!

My doctor keeps reminding me of this too. I keep hoping. I wonder how you know, thought? The crazy mix of meds I'm on, I'm really uncertain. I guess you'd just feel 'better' or 'normal' again. Sometimes I try to remember 'normal' and it's hard!

I'm still ok - kinda had a couple bathroom issues but I hear that's common at first. It's not horrible so far. But I hope things level out soon! I guess I'll take the next dose around 6pm...still trying to figure out how to space it twice a day. Maybe morning/late afternoon will work overall.

Oh - I just read this on the site - "Mestinon is usually started at 30 mg orally twice a day, titrating to 60 mg orally twice daily, if necessary (Grubb, Kanjwal & Kosinski, 2006)." I'm emailing my doctor and asking if I can start at 60mg twice a day but of course I probably won't hear back for a day or two since it's Sunday. How do you do a medicine twice a day? Morning/Afternoon?

I hate taking new medicines, and I think a lot of you share the feeling as we never know how we'll react. I'm trying to stay calm but am very anxious. Now is not the time to have an anxiety attack! I'm supposed to take 1 60mg three times a day but I overslept so I'll only be taking it with lunch/dinner today (so at least that's a small dose for the day). Anyone know, good or bad, what I should watch for in the next day or two? I tried doing a bunch of research here and found it helps some, doesn't do anything for others, hurts others...but couldn't find out how long it took everyone to find this out. A few days? A week? A month? Thanks in advance. Trying to keep myself occupied to not worry about this first dose...

I started by Inderal/Propranolol BB today (I can take 20mg three times a day but today I took it at lunch to see how I reacted). My heart rate is already better...70s/80s sitting and 90-115 standing rather than 80s/90s sitting and 115-140 standing. If it's doing this well at this dose I think I may only need 20mg in the AM and 20mg after lunch...I'll see. My doctor is flexible with what works for me. I also take Midodrine to keep my BP up, usually 10mg in AM and 5mg at lunch, and if needed 5mg in the evening. I have a headache...but I also just switch BC to the IUD from the pill yesterday and am thinking the headache is due to that. I have allergies so I hope they don't worsen...is it true the lower your BB dose, the less interference it has with allergies so I'd be best to use the lowest BB that's effective? I'm hoping 20mg two times a day will help me enough!

I got it today. It hurt. Now I'm cramping, but a nurse I know said I could cramp for a day so take the next day off and relax. I hope it works well. My Gyno and EP prefer me to be off the pill now...it's just one more medicine in my regimen of meds and personally the blood pressure/stroke/blood clot issues with the pill scare me a bit. I'll let you know how things go a couple weeks in. I know there have to be a lot of women interested in this and glad we have a place to share info here.

Flop - This is what I'll be doing and I don't quite understand it...the BB + Midodrine. Does keeping the BP up help get your blood around? I want to make sure I'm getting enough blood to the brain/body (ie, blood pools, heart goes crazy to pump it up, etc = POTS). I guess taking too much would make one dizzier than usual?

That actually makes me feel much better!

Good to know. I can always take it twice on the first day instead of three times! I've never had to use an Epi, but have one just in case. The bright spot is my allergist thinks my hives are more autoimmune (I hope) and I did not test positive to any foods (the 'dangerous allergies'). Pollen is another story. It cost me $400 out of pocket for that food test, but I guess more peace of mind is worth it.

I'm starting Inderal 20mg 3 times daily tomorrow. My doctor then wants me to add Mestinon on Saturday. We're doing a buffer to make sure the Inderal doesn't give me any severe reaction which would manifest fairly quickly, he said. And the extreme reactions are very rare. So fingers crossed it works! I need something to work! But Mestionon + Beta Blocker + Midodrine seem like such an odd combo..but I need something that helps. I'm not doing great!

Looks like I'm starting Inderal - 20mg - 3 times a day. If it's too much or too little we can adjust, the doctor says (I wear a Polar Heart Monitor usually). He said I'd know almost right away if it give me any type of severe reaction. Are there any other side effects to watch for? How would I know if it's making my allergies work (this coming from someone who gets stress hives so it's so hard to tell!). I'll give it a go and see where I'm out when I see him in about 10 days as long as I have no severe reaction. I did read you have to 'wean off it' or you can have heart attack risk? Is this accurate? Or is that larger doses?

I'd like to try avoiding the glycemic jump. I saw an Endo once and she said it could really help. I am just not sure what to eat...I could stand to lose some pounds so cakes/sweets can be avoided for now. I do eat pretty bad, I think, because I seem to be sensitive to things. Does anyone know of an overall healthy diet/eating plan that helps keep sugars under control?

Kansasgirl: Can't fly because of our cat and cars and some personal items we want to drive...it'll be a pretty trip, but exhausting! We're going to San Francisco so I hear the stable temperatures might be a LOT better for me. I've lived in the midwest all my life and 80 and humid one day and 50 and cold the next, freezing winters, etc. are very hard on me. KS and FL are hard on POTS, I think! Sophia3: I'm online looking for my kitty...I see one you can strap in online and might get that. He does like to get out and sit on my lap but that's not the most safe, I know! He has a portable litter (he's travelled on small trips...5-10 hours) and is ok with it. It's hard to get him to drink water, though. He always wants juice or milk in the car! Good idea on the multiple BB. I'll bring that up to my EP. Mack's Mom: I wonder about the MCAD stuff and myself too. But even my allergist agrees it's hard to deal with as my hives are so random, the only time I get them consistently is after a shower for a short time. Did your BB make things worse right away? I want to try one a good full week before we go on the road, at least. I just want to know within a few days if it's safe! What do Calcium Channel Blockers do/ I've not heard of them. Thank you everyone. I'm excited and nervous. I know the new climate will be much better for me...it's the week getting there that is gonna hurt!

I'd love to know. I'm looking for anything that will help me at this point due to my situation. It's interesting it didn't help you though --- did you eat a lot of carbs to begin with?