Weight Gain

[Donna F]

I havent been on here much lately thing have been very hectic, but have missed u guys. Basically I have been feeling very unsure of myself, i went from working full time and feeling very independent as a single mom to this. I have put on 35 lbs on florinef and have become so disgusted that my heart doc, tells me to stop eating so much. They added proamatine in the hosp and it really hasnt helped, now they want me to double it. Wondered if any of this worked for anyone else. They also said that possibly adding Adderall which is a amphetamine may help and poss get me off the florinef, but i have fears of taking uppers when i take Xanax for nerves 4 times a day and it seems too much mixture of meds. It has became very frustrating to say the least. I havent been able to sign on this site for a while so i have so much i want to input and ask as well so hopefully i can sign on and be albe to get answers. It is just depressing to feel sick and i cant even clean upyet, news flash not one family member has offered, really hurts as well, it is almost like they think i have fabricated to feel bad at my own convenience so depression and anger has taken over, and i am wondering should i be on a antidepressant or is it just another med with more side effects?? Thanks to u all for this site

Donna

[juliegee]

Donna,

I'm sorry you're still feeling so badly. People surely have a hard time understanding all of this autonomic stuff. It really hurts when family members are skeptical. Be specific and ask for what you need. Don't wait for them to offer.

Weight gain is one of the reasons I didn't like florinef. It made me feel really good, controlled POTS symptoms, lots of energy, etc. But, it also made me feel really hungry, and my face looked really round. I'm almost 45- an age where I want to keep a close eye on my weight as it's so easy to start gaining when your metabolism slows down. I would definately talk to your doc about other options. I've never taken the proamitine, but I hope others can comment. I know Adderall is helpful to some, but I understand your concern about mixing too many drugs. I hope you have a good doc who can safely help you figure out a helpful combo for you.

Are you well enough yet to try to walk a bit? Just a few steps around the house at first, then a few steps in the yard, etc... Some exercise may help you start losing that weight and also help with your mood. If you can't walk yet, spend some time outdoors. Just being outside can be so lifting. Set yourself up in a cozy recliner and rest.

I hope your teens are making life easy for you and behaving :-) Hang in there!

Julie

I havent been on here much lately thing have been very hectic, but have missed u guys. Basically I have been feeling very unsure of myself, i went from working full time and feeling very independent as a single mom to this. I have put on 35 lbs on florinef and have become so disgusted that my heart doc, tells me to stop eating so much. They added proamatine in the hosp and it really hasnt helped, now they want me to double it. Wondered if any of this worked for anyone else. They also said that possibly adding Adderall which is a amphetamine may help and poss get me off the florinef, but i have fears of taking uppers when i take Xanax for nerves 4 times a day and it seems too much mixture of meds. It has became very frustrating to say the least. I havent been able to sign on this site for a while so i have so much i want to input and ask as well so hopefully i can sign on and be albe to get answers. It is just depressing to feel sick and i cant even clean upyet, news flash not one family member has offered, really hurts as well, it is almost like they think i have fabricated to feel bad at my own convenience so depression and anger has taken over, and i am wondering should i be on a antidepressant or is it just another med with more side effects?? Thanks to u all for this site

Donna

[flop]

Hi Donna,

I think that most of us with POTS go through phases of depression, especially with the frustrations and misunderstandings of our condition.

Florinef can increase your appetite although it doesn't directly cause you to gain weight the incerased appetite cetainly leads to weight gain. Have you tried munching on things like celery and cucumber that have virtually no calories but take time to eat? Pretzels are high in salt but low in fat (not the flavoured variety) so good for POTS and the munchies. Also drinking water can make you feel more full.

Does your doctor know how you are feeling? They can factor your low mood in when they are selecting medications for you. Your doctor can also help to tell if you are clinically depressed (versus having a normal reaction to being ill) and might decide to try a med like an SSRI to help both depression and POTS. Everything needs to be tailored to your condition so your PCP is probably in the best position to advise you.

((((HUGS))))

Flop

[Maxine]

I'm not a Doc ---so read my words with caution.

The more I hear about adderal, the more it worries me. I would much rather see you be a few pounds heavier, then be on a medication that might make you feel worse just so your doctor can see you weigh less. Is he concerned for your well being due to the weight you gained-----------------meaning the extra weight will make you sicker, or cause other health problems not realted to your POTS? If my heart doctor told me to stop eating so much, I would have to leave his office, otherwise I may be tempted to tell him/her how insane they are for talking to a patient that way.

I gained 30 pounds on wellbutrin, and my doctor said it makes you lose weight. Not so----maybe some people do, but others can gain weight on it which has been proven in studies. I still didn't turn out obese---except in the opinion of one NP who was wrong, as a size 12 isn't obese. Most doctors, if they said anything at all in regards to my size, would say I was SLIGHTLY overweight.

The fact that you take xanax to calm your nerves tells me adderal may not be a good drug to take in your case. My nephew takes it for ADHD, and he has to take something else to calm him down at the same time. I'm trying to convince his parents to take him off the drug because it makes him so jittery and prone to panic attacks.

A lot of people with POTS also struggle with heart arrhythmias or tachycardia, and there have been studies that say people with heart problems should not take adderal.

I'm so sorry your feeling so down. No wonder, this doc acted like an A**. If anything, be thankful for being a better person then him----and maybe find a doctor who is concerned for your wellbeing, not your weight if it's not posing any other risks to your health. I have just started watching sugar in general. Even though I never ate a lot of it at once, the cumulative effect of a little bit of this and that could only make losing weight more difficult. I didn't have to think about things like that before, because I never had a weight issue until POTS. Now I have to think about everything I put into my mouth becaue vigorous exercise is not an option. I ended up losing about 15 pounds-----------------so now heading back to a size 10--

I know what you mean about florinef helping your symptoms Julie. I haven't tried florinef, but when I had large doses of steroids during and just after my cervical spine surgery, I felt pretty good for a while after the surgery. I was given high doses, but only until I went to a step down room from ICU, and they had to give me insulin injections because it made my glucose go up to 260. However, during the time the steroids were given to me I was pretty tachy, but once that went away I felt stronger, less fatigued, but it did not affect my appetite one way or the other.

Donna, be good to yourself, and you deserve to have better understanding by your family members. It's expecially frustrating when you gain weight, it just adds more to the "lazy" stigma we all get because of ignorance. You must be healthy if your gaining weight----------------------uhhhh, did they ever think your gaining weight because your not? Don't let anyone make you feel less then the good person you are becuase of your health issues, or because the meds make you gain weight. If you have the time to take a second look at your diet, and you feel you could cut out a couple of things to help you lose a few pounds, then great---------------------but do it because you want to, not because some ignorant doctor insulted you.

Uhhh, sorry to make this long-------------typing wears me out------------- I had to add my 2 cents------OK it's more like 10 cents, but I just hate it when doctors insult their patients.

I hope you feel better, and find treatment that works out well for you. Sorry the proamatine didn't help.

BIG HUG

Maxine :0)

[mattsmum]

I'm on florinef too and i am in the same boat as you Donna. I'm always hungry. The specialist said i would put on some fluid weight with the meds but they failed to mention i would be hungry all the time. I'm so disgusted with my weight gain but i am lasting now thru work w/o being so tired so I dunno wots worse. They say they want to try me on the adrenals next half of me thinks well that would be good maybe i'd loose some weight but other half says the florinef is making me feel better symptom wise so I dunno.

big hugs just do what you can to survive

Julia

[pat57]

I wonder if the family has a need to think of you as fabricating how bad you feel. That -to rationalize not helping you. Rationalizing to avoid feeling guilt.

Being that you have a pace maker, its obvious that you have a serious condition.

I think a pharmacist could help you with your concerns re adding another drug. But it appears to be part of a process to find what works best, and that can have a payoff.

good luck!!!

[yogini]

I can understand how you feel. Just yesterday I tried on a pair of jeans I bought in October and couldn't pull them past my hips. This is because I am on more medicaiton and haven't been able to exercise. It is really a miserable feeling.

How much florinef are you taking? Is it possible for you to try a slightly lower dose? Can you incorporate some exercise into your routine? It is great that you have found a med that is working for you- many people on this forum are not so lucky. I agree with Maxine that it is better to weigh a little more and feel better. I am not familiar with Adderall, but it is not one of the more common POTS meds. If you are going to play around with your meds, you might want to try some of the more commonly used medications before trying something like Adderall.

[Donna F]

Thanks to all for your advice, 1st of all i was on .2mg florinef a day when put on midrodine, i have lowered it to .1 but am still gaining, the pharmacist said it was poss a gamble to take Xanax and adderrall, but im desperate, i am taking a low dose of it, but all docs disagree. There is so many diff opinions among them. My family inculding my boys except my oldest dont understand as long as i am not bed bound they think i am ok. And as far as exercise, ha ha, i almost die if i mop or vacuum. The meds give me no energy at all!! The pharm did say florinef causes u to retain fluid is a lot of the gain,besides the appetite, i have always been a junk food eater, but stayed very thin i was at 130 lbs 5'81/2" in Oct and now at 165 , it is very depressing , swimsuit not an option, and i also have a heat intolerance so my boys are on spring break and i feel indadequate cause i wanted to take them to the beach, anyone else have this prob and feel guilty? My mom claims shes read up on all this but i tried to get her on here, thinking if she could talk with some of u she could understand, she is 60 but goes from 4 am til bed nonstop and looks and feels younger than me, she is only 145 lbs, she dont have a clue and it has caused some anger and seems after i hang up from her i am always upset. I know she keep the kids durin the week, but she never ask how i feel, if i am upset or angry which happens, she tells me to get a hold of myself and grow up!! Am i wrong for being angry, or am i expecting too much?? As far as my sis or anyone else, they offered when i was first diag to help with shopping, maybe cleaning, etc. **** they dont even visit, so yea it hurts so i do the best i can but i am a clean freak and i feel like a lazy fat slob!!! I know i am rambling but cant help it, i am becoming isolated so bad that on easter i sent the boys and stayed home, i am not even goin to family funcitions, besides my brother who is i dont think realizing the hurt is causes, as he is a clown, but he has made comment such as tellin mom to widen the door, i mean i am still only in a 12, but i dont know they made a big to do cause i went to the casinos one night to get out and act like now i am able to do what i want and am usin this as an excuse!! Thanks to all of u for ur support

Donna

[pat57]

Donna, I have trouble with the family too. I had an aunt tell me "That's not nice" because I don't make dinner for my husband and daughter when I go into to work at 4:30 pm. And I have a brother that laughs at me because I've said- I can't go-I have laundry to do. Well I don't like the Aunt and The brother is just being stupid. I have been stupid a few times myself so I can excuse him. He has done enough good things that I know he does care for me and "trys".

I think the Aunt believes in MRS. Cleaver which makes her inflexable so I don't bother with her unless I have too.

And I know she's wacked.

good luck........