Hi MM3,
I know that steroids increase a persons appetite and cause fluid retention (prob. why your NS is upping our Diamox). I remember being so moody while I was on them too (more like the word that rythmes with witchy).

Also higher doses can make a person crave more sweets, carbo's.....

I think I gained 6 pounds in one week while I was on pred., I took it for 2 weeks for a sinus infection, not for pain.

You are not a freak of nature, it sounds like the steroids to me, I call steroids the "devils candy" since they made me feel so awful, not like myself at all...I remember I kept thinking "what has taken over my body?".

you should def. tell your Dr. what is going on and see what he says.
I hope you start to feel better, the weight will come off once your off the steroids (mine did).

I'm sorry you are going through all of this, I know it is hard and you are in my prayers. Jazzy

Hi MM3!

I'm feeling a bit like a freak as well, but the opposite situation. I've lost 30 pounds since September, except I haven't really gotten any smaller. Go figure. I decided it's because I have no desire to eat, but can't even walk to the bathroom without stirring up a HA (no eating and no exercise). So I've lost 30 lbs of muscle. Even my face is a little mushy!

It's a tough road to be on. Keep the faith, and buy comfy pants with drawstrings in the meantime. You'll get your old self back.

Hi Monkeymon!
I do have heard that steroids do cause weight gain. That's why so many bodybuilders tend to use them. On the other hand, there are steroids to lose weight also. You probably were into the first type. As to the Diamox as a way to lose weight I'm not that sure is the right pill. You'll certaintly lose a few pounds of water, but will not make you burn fat. What I can tell you is that being on Diamox has made me feel permanently tired amd worn down, since the first day I began with that medication. My blood tests have shown that I don't have low potassium, which is the first explanation my doctor gave me. As far as to exercing, I have really tried to walk but I'm too exhausted all the time. Right now, I've gone throught several blood tests in order to rule out any other condition that may be causing me this tiredness, but I'm still awaiting for the results (they should be available on Tuesday).

I still wonder how I managed to lose those 30 pounds in the past 5 months. I can only attribute it to the diet (or sort of a diet), mainly increasing the intake of water, eliminating all soda pops and reducing gradually the portions of everything I ate. Nothing extreme, trying to make it a good part of my life and not a punishment for being overweight. My diseases have taken a toll of me, that's why I refuse to the punish myself but at the same time I need to give my best to contribute to better health. I try to make a balance with those both goals.

I'll try to figure it out, why I'm so tired other that the Diamox explanation, and I'll let you know.

Thank you girls for your help. This truly is tricky. I have been off of the steroids for 2 days now and am at least getting back to normal eating habits, which is good.

As with many of you, I have greatly increased my water intake in hopes that this may assist with cleansing my system. The problem is that, as I had suspected, now that I am off of the steroid, I can feel the pressure in my head rising again. And, of course, I am more lethargic, even a bit achy.

That being said....I forced myself up today and took my girls and the golden retriever out for an hour long walk at a decent pace. I had to force myself, and there was nothing about it that came easy...but, I did it. I hope to do this everyday. I came back and took a shower and could barely move for the rest of the day. Furthermore, I was really not a nice person to be around due to feeling so poorly. I hope it begins to come much more easily.

Congratulations, Bax and Krystell on losing 30 pounds...although, that is horrible if it is all muscle. Please keep me updated on what your doctor's are able to determine. It's also a bit disheartening to hear that even with the 30 pound weight loss you are still having these HA's. How frustrating!

Please know that I appreciate you all very much. We are a small group, but, you have become the few who truly understand me. Thanks. I'm praying for you always.

- MM3

Hi MM3,
So glad you got out of the house, even though it was hard.

I can't remember if I told you but when I was dx. I was not obese and of course post menopausal (it usually hits women who are in their child bearing years), so it can hit anyone.

Coming off the steroids was when I was the most moodiest (I hope that's a word), and that is common...so it will get better.

Do you think it is the diamox that is wiping you out? It did with me, I was so tired and I slept all the time. Are you still on the high dose?

Ok now for my Occupational Therapist side coming out...like I said it is good that you got outside, but it sounds like you over did it since you crashed the rest of the day, maybe you could break up the time of your walks or exercise so you are able to function the rest of the day, that is better much better for your body (plus you can build your endurance quicker that way)...Ok my OT self went back into hiding, promise.

Jazzy

Oh,Jazzy I do appreciate your OT input. As a matter of fact I tend to the same...stay forever avoiding the exercises and then in a sudden "guilt trip" I try to compensate for all those months by over exercing which allways leaves exhausted for many days. For the moment I've given up on any physical activity, until I regain some energy, then I"ll try to follow your advice.

Hi Krystell,
I have taught many pt's about energy conservation (a fancy term for building up your endurance and not crashing from doing too much all at once). And I have to practice OT on myself all the time!

Oh yes, I have guilt tripped myself so much, but now I know to just do what I can.

Everyone has good days and bad days no matter what their health condition is. Right now I can't do much exercise either so I know, just from what I've seen working with people, that even a little, like doing an arm excerise holding a canned food for weight can help (even if your bed bound), or if that is too much just do simple range of motion.

You know we can't see progress in ourselves so it is hard for us to see it if we do a little each day. On some days if I had the energy to take a shower that was considered a great day for me. You just do what you can do.

I did something that really helped me, at the end of the day instead of listing what I couldn't do I listed what I did do and gave myself a pat on the back for it...and I mean very simple things like I brushed my teeth, I got out of bed, I walked to the bathroom...it made me feel better about myself and would give me hope. For instance you used the computer and typed, that is a big deal for someone with little energy.

Wow, the OT came out strong in that one, I hope you don't mind, I don't want you to think I am lecturing you to do something, I just know how it is and wanted to share what i try to do for myself. Blessings, Jazzy

This is all very helpful. I am just really very angry right now. I am taking a lot of it out on my husband. He's not doing anything wrong and he keeps asking me why I'm so mad. The truth is that I am deeply saddened right now. I am hurting over my inability to function "normally". I want my family to "get it". I feel like if I'm laying around I appear lazy, although nobody has made comments saying so. In fact, I think for the most part they have been very supportive.

Today I took my girls out to a movie and to the grocery store. When we got back home I had my son unload the groceries and my husband cook dinner. My "outing" replaced the walk that I would have taken in place of it. I took a shower and then rested after that.

I am still on 1500 mgs. of Diamox, 20 mgs. of Lasix and the NS wants me to up the Diamox by another 500 mgs./day. The medication doesn't make me sleep. However, I do feel nauseous with the morning dose and feel fatigued and weak throughout the day. I still experience some head pressure and dizziness/vertigo. And...of course, the pins and needles sensations with some parasthesia.

But, what is the alternative? Will I ever be able to work again? Can I finish painting that room I started? Will I be able to landscape in the Spring? Can I clean the house and cook dinner in the same day?

I look at people like Michael J. Fox with Parkinsons and God knows how much medication he has to be on and he still fights the fight. My sister had cancer and she still tried to get out and about as much as she could. Am I weak if I have a bad day??? Should I not fight everyday to be up and moving even if my body tells me I can't???

I guess the doctors have me believing that if I work out, if I fight against the fatigue and symptoms, if I lose weight and get in shape...that the PTC will disappear. Or...I can lay around and never get my life back.

I just want to know how to get my life back. AAAAAUUUUUUGGGGGHHHHHHHHH!!!!!!!!!

-MM3

Sorry MM3 your are having such a hard time. there are days I cry or get angry and feel like screaming because I just want my life back and be able to go out and do things that I used to.

It sounds to me that you are the hardest on yourself and what you "think" you should be doing. You sound like you are a very active person and like to keep busy and it is prob. more frustrating for you, than most, when you can't do the things you want. I would ask myself "why am i so hard on myself, where does that come from"?

Going to a movie and a grocery store is a lot to me, I can't do that right now and the thought of it makes me tired!

You have to remember you are on a medication that causes fatigue (diff from sleeping) and nausea..diamox...it is a side effect.

What did your Dr. say about your fatigue levels? When I told my Dr. he actually lowered my diamox since I could barely funtion I was so tired.

Also has he had you do a blood test? that is important to do while you are on diamox.

It is normal to be angry...maybe you could sit your hubby down and just explain to him what you said here and your frustrations so he knows it is not him.
Today I had to apologize to my husband for being in a bad mood and I started to take it out on him, then I stopped and just told him what I was going through at that moment and he understood.

I ask all those questions myself about if I will ever get better or get back to work. Maybe we can scream all together so we can feel better. AGGGGHHHHHHHHHHHHHHH
Jazzy

MM.Jazzy summed it up great, another thing to remember though is that the pain does make us angry. On my bad days, I yell and scream at my family because they ask me to do the littlest things, they are very understanding because they have never known me to be "well" but still its not fair to them...

The worst part of all that, when you do get upset, it raises your pressures and makes you feel even worse.

For me, the medications NEVER helped. I learned my limits, and everything was done in bits and pieces, a project that would take a "normal" person an hour to do would take me a day or longer.

You did alot, and you do need to rest after that. I struggle with the basics and Jazzy made great point of focussing on what you CAN do rather than what you cant... When you are newly sick, it takes a LONG time to adjust to new normals...and I know for me, I have never quite accepted them.

My primary doc has been really good about understanding the impossibilities of weight loss, My neurologist is ok too, but my neurosurgeon is a real jerk, he thinks this will magically go away (forget the fact that I was only heavy for my age when this started, not my height) My rehab doctor reminds me that exercise can come sitting down, chores at my house have been a team effort for years, Hubby Washes clothes, Daughter Dries, and I sit and fold, then Daugher puts them away...Over time every chore has become like that, it brought our family closer together.

Things may never be normal again, or they might. In the meantime try not to be too hard on yourself.

Charlotte

Thanks girls! While I was working, my husband would help out with chores around the home. But, as a stay at home mom, I have always felt responsible for keeping the home clean, decorated, landscaped, stocked with groceries, and of course cooking dinners....along with going on field trips, and taking the children out on weekends. Don't even get me started on holidays!

Now, I can't not only work...which impairs us financially, but, I can't keep up the home on my own, etc., etc, etc.

I suppose what really angers me is that for TWO YEARS...I told my PCP, NS, OB/GYN, ENT and ER docs. that something was wrong. I complained of a "whooshing" in my left ear, chronic fatigue, head pressure, dizziness, partial occasional parasthesias in my limbs, cognitive and memory problems, and absence seizures. BUT...more importantly...I complained of missed periods, unexplained weight gain, "hot flashes", occasional swollen glands/lymph nodes in neck, and...oh yeah...did I mention an unexplained weight gain?????? Yes...blood tests were done, MRI's were done...but...I was blown off. I was treated like a crazy person.

The more I read about PTC, the more I find that many women make these same complaints prior to diagnosis. What angers me is that this is described as "the disease which occurs to obese women". Rather than, "the disease that seemingly has some hormonal effect causing weight gain, and subsequent PTC diagnosis with worsening symptoms".

I have read that some doctors have linked this to a "unknown hormone" or problem with the adrenal gland. What upsets me is that as you all know...these treatments that we endure are weak at best. The Diamox causes an illness all its own...and for many works minimally well. The shunt surgeries are problematic at best. While they may help, they require multiple adjustments, are risky, and of course, require time to heal along with the financial burden of cost.

We are treated as if we are crazy....both prior to the diagnosis....and, yes, after the diagnosis. We are expected to just "suck it up".

But, what I demand here is "proper" treatment. If this disease was better understood among the medical community, perhaps I wouldn't have waited 2 years for a diagnosis. In those 2 years, that I waited, I gained 35 pounds. If I had been diagnosed early, this wouldn't have been an issue. This is NOT a fat girl disease! Furthermore, understand that it is our symptoms that are being treated here....NOT...the disease. I believe there is a hormonal component, or perhaps, more likely, I believe that the excess pressure presses on the pituitary gland causing a ripple effect. I believe there is a better treatment than what we are receiving. I believe there are better answers.

This is why I'm angry. I'm angry that poor TJ is in a hospital right now with no high pressure readings, dealing with the constant NS cognitive tests that we all know so well, feeling like he has to prove that he's sick.

I'm angry that my husband can get dressed up and go off to work everyday amongst the living, while I sit behind trying to figure out what one task I will try to tackle today. I feel that this could have been prevented. I feel that if I had been truly listened to, I wouldn't be where I am today.

I don't see my NS again until the 30th of April. I have been on the Diamox for a month now and no blood work has been done at all.

Thank God for you guys here...I could not do this alone. That is for sure. I am sending hugs your way. Thank you for the continued support.

-MM3

Jazzy: I really needed your advice, is another way to see things, and it's something I really need to do: re-focus my "low-energy" problem. Regarding that subject, my blood tests came and there are some tests that didn't came out well. I suspect all are related to the Diamox, although I'm only in a 500 mg/day dose, which is a low one. These were the main concerns:
1. Low Sodium
2. Very Low Carbon Dioxide
3. Low Osmolality Serum
4. Low ALT (SGPT)
5. Potassium was the lowest within the normal range.

Do you know which one of those maybe related to my "low energy problem"?

Monkeymom:
I really understand you. As a patient of cronic severe endometriosis (for almost 20 years of suffering severe pain, every 2 weeks) I know sometimes one feels as in a prision of pain and the following limitations in life. There are few words I could say to you that could help you cope with your pain, but trust me, the only thing that have helped me is keeping the faith that somehow, someday, I'll find something that may work to help me reduce the severe pain I experience for as long as a week, with only 2 weeks to recover to start all over again. These past 20 years have been very hard and gradually they take a toll on you, but faith, and keeping myself busy consulting doctors, reading books, trying diets, acupunture, surgery and anything I hear of or read of, is what keeps me standing. My PTC was discovered on November 2008. The main theory is that 20 years of hormones to treat my endometriosis, finally caused my PTC. Lucky me, after reading all your posts, I know I haven't tasted the worst of this condition, but as I told I'm a veteran in subject of cronic pain due to my other condition. So, keep looking, keep asking and you'll someday soon find something that will work and give you back your life.

Best Regards,
Krys

And......as a matter of fact, my pelvic pain started aroung the age of 16, I went to almost a dozen of Gynecologists, none of them even suspected that I had endometriosis (although this is a very common disease). Believe it or not, it wasn't until I was 30 years old that I finally found a responsible doctor that made the test and confirmed my condition. By that age, it was too late for many treatments and I am infertile due to that delay of diagnosis. Trust me, I understand your deep frustration. I tried a surgery on 2001 and the doctor who did it, didn't dare to perform it on the last minute because she said it "was too risky for me". I took me several other doctors to find one that dared to perform the same surgery this last February 2009 and he was able to do the best he could considering the damaged already done by the past 20 years of the untreated disease. He told me that the surgery was really risky to the doctor, not the patient. He also told me that he wasn't surprised that the first doctor declined to do it, merely because I'm an attorney, which make doctors be "more careful" and "conservative" because of the fear of lawsuits. That is sooooo sad. It means that I must lie every time I see a new doctor, just to avoid that "fear factor" that we attorneys cause on doctors. If I had known this last Ob-Gyn at least 10 years ago, I may have had the chance of getting pregnant, now I'm almost 40, which combined with the endometriosis and PTC makes very hard for me to have a miracle even trying In Vitro Fertilization.

Anyway, here we are, and we have each other to cry in each other shoulder.

Krys

Hi MM3, yeah, it pisses me off that such stigma goes along with PTC and it's all about our "weight". Then why doesn't everyone who has gained weight get this? Then why do more women get this than men? At least I saw one article saying they are finally questioning what causes the weight gain as a clue that caused the PTC.

I think I wrote that at another time I have to constantly teach health care professionals about what PTC is! Well my head is starting to hurt too much so gonna lie down. I'm glad we at least have each other! Jazzy

The only reason I got dx. was that I lost vision in my left eye and was sent to a neuro opth who has a lot of cases of people w/ PTC.


Could you call your NS and leave a message with him about your concerns? I hate that we need to suffer while we wait for appointments, keep calling and bugging him/her, that's their job.

Hi Krystell,

I asked my hubby who is an RN about your blood test results and he said he didn't think that those levels would cause you fatigue, but I would stil ask your Dr. I know for me if my hematocrit is even slightly below normal I feel more tired.

Even if you are only on 500 mg of diamox, that level for you may cause you to be so fatigued.....I was also wondering if you are sleeping good at night which can be a big factor in how we feel during the day.

I would call your Dr. and tell him/her how fatigued you are (has he checked your thyroid levels?) He/she needs to know this to help find out what is making you so fatigued.

I hope I made some sense my brain is not working so well today. Jazzy