Pulling hair out in clumps

[flutterby]

The MG medication was working wonders. Then I had the heart blip and stopped taking it for a few days. Started taking it again and it is working on the muscle weakness - quite a bit, although it wears off way before my next dose - but the fatigue is back in a big, big, big way. I get a holter monitor tomorrow to wear for 24 hours so we'll be able to see if it's heart related. I think not, but we'll see.

I had to go back on restasis because my eyes are so dry they feel like there is sand in them, they burn and all that good stuff. My mouth is so dry I gag out of nowhere. And the MG medication is supposed to (as a side effect) increase tear production and salivation. I keep trying to run a fever and now my hair is coming out in handfuls...when I wash it, comb it, or even just run my hands through it, I'm pulling out lots and lots of hair - enough that I flush it instead of putting it in the garbage can. After I wash it and comb it and have pulled all of that hair out, there will be just tons of hair all over my shirt an hour later.

Black depression hit me hard yesterday and I don't know if it's a symptom, if it's the fatigue kicking my butt, or if I just can't take the setback after such an amazing experience. It's scary depression. The kind where I just want to close my eyes and sleep til I die. I never hear from easy child and for some reason tonight I'm fixated on Christmas, and then what will Christmas be like in a few years when difficult child is grown, too. And I can't stand it. I think I'm going to end up alone for the rest of my life.

 

[Wiped Out]

Heather,
I'm sorry-I know you were feeling so much better and then the setback. I would definitely call your doctor tomorrow and let him/her know what is going on!! Continuing to keep you in my prayers. I'm sure you won't end up alone but you are always welcome here in Wisconsin-although holidays at my house are a bit interesting with difficult child-!

 

[Shari]

Hugs.

I know its not exactly the same, but when the "good spells" with Wee would end, it was always SOOO hard to go back to that... I can't imagine how much harder this is for you.

No one knows what the future holds, but I've decided if I ever end up alone on a holiday, I'm going to go do something that I want to do. Travel. spend Thanksgiving horseback riding... You're welcome to join me!

 

[KTMom91]

Many, many, MANY hugs. You are always welcome to visit us as well.

 

[DammitJanet]

Im sorry about the medication thing too. I know how that feels when something starts working, you feel better for a time and then it all slips away.

For what its worth, my hair was doing that falling out in clumps thing for several years and we really never did find out the ultimate cause. We thought it was medicine induced or stress induced which is entirely possible. For a while we really thought thyroid but mine always showed just this side of normal. It just recently went not normal and we put me on medications. I was shedding like a dog! I could have never gotten away with a crime because I would have left enough hair to rebuild myself...lol. Its much better now but I still think its more than average people. Getting my hair cut short probably helped the shedding too.

On the empty nest. I was convinced mine would leave me too. You see how that went. I have a feeling that easy child will come around eventually and girls are always closer to their moms anyway. Dont sweat the future.

 

[crazymama30]

Hugs, I can only guess at how demoralizing your backslide must be. I hope the holter monitor helps, if only to RO something.

 

[flutterby]

I'm thinking the break in fatigue was a fluke. Or I was so excited by the improvement that it overrode the fatigue. With the dramatic increase of other symptoms - dry eyes, mouth, etc - I think I'm flaring with something else. I still think I have Sjogren's in addition to MG. Once you have one autoimmune disorder you're more likely to have another.

The good news is that I'm still not having pain, other than the lower back and hip which I've had since I was a child. I haven't had or needed vicodin for weeks. So, it could be worse.

 

[Shari]

Focus on the bright spot (no pain). Hopefully they can manage the rest of the symptoms.

 

[AnnieO]

Heather... HUGS! And you're always welcome at our house, too. ...And it's close!

 

[Hound dog]

Heather, odds are the medication just needs to be adjusted. You felt great when you first started it simply because of the difference it made. You "seemed" to feel awesome.......while what it did was bring you up out of the extreme symptoms and made you feel that way. Your body has now grown accustomed to that dose and so you don't feel so awesome now. You said they started you at half the normal starting dose to be cautious. I'd say you need to be increased to at least the normal starting dose and see how that does for your symptoms. As long as you've been suffering from the symptoms, it's possible you'll need several adjustments in the medication dose to get it where it needs to be for you at this point.

With my script medication for the folic acid, when I 1st got it I felt like someone had given me a jolt of energy I hadn't had in years. Honestly, that just showed how badly my body was in need of the medication, how deficient I actually was. Within several weeks I just felt normal......the jolt of extra energy was gone. But I no longer fell asleep several times a day at the drop of a hat ect. My body was getting what it needed so I no longer noticed the huge effect. But let me forget to take it.....or god forbid not have the money for filling the script for a few days......and wow! It's that jolt all over again.

I know there is a valid concern for your heart. And there is a risk this medication can cause heart block. (actually tons of medications can) But you're going to have to consider quality of life here. Is it worth it to you to feel more normal with proper dosing of this medication despite the risk of heart block? Are you willing to take that risk in order to feel better? If you feel that it is then you're going to have to put your foot down with the docs and lay it on the line for them.

My docs know with me it's all about Quality of Life versus length. They've discovered they can not change my mind on this issue. I follow my renal diet to a point......but I also allow myself foods not allowed on the diet occasionally. If I stuck strictly to that diet I wouldn't be eating much and would be miserable......took me 2 wks to be certain of that. So I've come up with my own modified version. I take my medications because they make me feel better. (no brainer there) I could deal with dialysis I think probably up to a point. Transplant.....well, they won't discuss it with me anymore as I tend to make them want to rip out their hair. lol We'll just say that 99 percent of the time it's not what it's cracked up to be.......and that's IF you're lucky enough a donor can be found. Nope. I know the procedure, I know the after care. I know the odds of rejection. Some people may believe it's a miracle treatment, I just am not one of them. No thanks, it's not for me. A few extra years dealing with those issues is simply not worth it.

I'm assuming your neuro is treating you for this? Call him and ask to have the medication adjusted.

((hugs))

 

[flutterby]

I know there is a valid concern for your heart. And there is a risk this medication can cause heart block. (actually tons of medications can) But you're going to have to consider quality of life here. Is it worth it to you to feel more normal with proper dosing of this medication despite the risk of heart block? Are you willing to take that risk in order to feel better? If you feel that it is then you're going to have to put your foot down with the docs and lay it on the line for them.

That is exactly what I told the doctor, but they get all squirrely. They physiatrist wanted me to see a neuro just for confirmation, but he wanted to continue to treat me - which I was ok with because I really like him and I'm not a big fan of neuros (haven't met one that listens). But, as soon as the *possible* heart issue came into play that changed. The doctors always get all freaked out about the heart, but I'm the one living this thing and..you get the idea. I'm tired of dealing with the heart. I'm wearing the heart monitor now - get to take it off at 1:45 today, which can't come soon enough cause I react to the adhesive and I want to scratch my skin off. But, hopefully this will clear things up for them and they'll get themselves out of the tizzy.

I'm no longer on the half of the starting dose, however I'm only taking it every 8 hours and it's wearing off in about 4 hours. According to rxlist.com, starting dose is 60mg every 4 hours and I'm doing 60mg every 8 hours. And I'm not noticing near as much improvement on the 60mg as I was initially - still better than without, but not as dramatic as initially.

 

[timer lady]

Heather ~ you're in the beginning stages of treating this disease. It's going to be hit & miss. AND your moods are going to take a nose dive. Anyone who lives with a chronic condition has those times of despair.

The MDs will work out a the right treatment plan to address all your needs. I know I'm preaching to the choir.

 

[Star*]

This may be way out of line....but since I am not there to invite you to Bob Evans, has anyone suggested you find a MG support group? (twists lip and exhales) See, I can think about all the great suggestions from a friends perspective, and I can assume what a doctor or a pharmacist may or may not do, and I can empathise and even sympathise with dark depression and chronic pain. I live with it every day. HOWEVER - it's not YOUR pain, it's not YOUR worries, it's not YOUR way of dealing with things. I would love to say "Hey Heather I'll swing by and pick you up and take you to the fair, and get you some cotton candy, a puppy, a balloon and it will be all better, you'll see!" Just hoping something in there would perk you up, but there is no way in this world that I could possibly know what you are going through - another person with MG? They would.

I think the neatest realization I ever came to here on this board in trying to help anyone with chronic pain was when Witz gave me the spoon poem. So much realism in it, that it made me understand that while I want you to be better, I can not wish you better, or hope you better. I can only let you know, I'm here however you need me from as far away as I am which basically means - I love you, and that's all I can do from here. Maybe in knowing that? It helps just a little.

As far as Christmas? One thing at a time kiddo. You first. Santa later.

 

[flutterby]

Thank you for all of the support, ladies. It means so much to me.

The black depression has lifted to a mild case of the blahs. I quit smoking this weekend and I withdraw hard, which played a big part in the depression hitting out of nowhere, I think.

I'm going to have ups and downs. It's just that a few weeks ago I was thinking about going back to work soon, updating my resume on monster.com, checking out the jobs posted - getting really excited. And reality hit and I'm not ready to go back to work. Not yet. Soon, I hope. I got ahead of myself.

Star, I looked into support groups for MG. Thing is while MG isn't rare, it isn't common either. The closest support group is 2 hours away. I would think living close to Columbus - with OSU and our other big medical centers - there would be one here. Instead, it's in your mom's neck of the woods. At least that's what I found via the MG Association. I see a neuro on Tuesday and I'll see if he knows of any locally.

Thank you all. (((hugs)))

 

[crazymama30]

Hugs heather. I am glad the depression has lifted to the blahs. Chronic conditions hoover big time, and if you do not have a MG support group in your area, is there a support group for people living with chronic conditions? I know there is one here that husband is going to start Monday. He even remembered it and brought it up yesterday. Big steps for him.

 

[Star*]

Well, my Mom completely adores you! (as do I) Make a day of it! - But stay away from the tables.