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General Mast Cell Disorders Discussion >> Medicines >> Fatigue - Is there anything to help?
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Message started by nelson1600 on 05/26/11 at 07:53:31

Title: Fatigue - Is there anything to help?
Post by nelson1600 on 05/26/11 at 07:53:31

Currently I take Xyxal, Zyrtec, and Zantac (the generic); Xyxal is only once a day before bedtime and the Zyrtec and Zantac I take twice a day. (I was on Singulair also but my DR commented that it was basically serving the same function as the Xyxal and because of that he recommended eliminating the more expensive prescription)

I can not seem to remember if I have asked this before; but are there any supplements or something that anyone is aware of that can be taken to help combat fatigue?  I have good days and bad days; but boy are my bad days bad and even as a person who can take more freedom in dictating a schedule the fatigue still impacts my ability to conduct business and impacts my "Family" time.

Anyway, if I've asked or it's been asked before and I just don't remember or did not read enough; I apologize; but today is one of those days where I have had meeting after meeting and I am fighting to stay "conscious".

I look forward to ANY suggestions to this post.

Title: Re: Fatigue - Is there anything to help?
Post by Susan on 05/26/11 at 08:32:11

Hi!

I don't know if they are safe to take with masto, but there are two drugs that are used in a lot of patients whose illness causes fatigue. They are called Provigil, and the newer one is Nuvigil. I think I remember they are actually antihistamines for the brain, so they may work well. I'll see if I can find something on them.

Title: Re: Fatigue - Is there anything to help?
Post by Susan on 05/26/11 at 08:39:18

Well, I remembered wrong. Provigil (modafinil) is actually a pro-histamine drug, so could be problematic. You can read some about it on Wikipedia.
http://en.wikipedia.org/wiki/Modafinil

Title: Re: Fatigue - Is there anything to help?
Post by Riverwn on 05/26/11 at 09:24:02

Sorry Lucas, but that doctor gave you some wrong information. The Xyxal is a completely different med and works differently than Singulair.

Xyxal is an antihistamine--it blocks histamines, that how it works. I think it is an H2 blocker.

SINGULAIR works differently to relieve symptoms by blocking leukotreines, which can be elevated quite a bit in some masto patients. Many people here are on Singulair and say that they have added energy from it (take it in the morning). Some people here take 20 mg to 30 mg a day because of the benefits they feel on it. Im on 10 mg a day but I want to increase it :)

Just wanted to let you know,
Hugs
Ramona

Title: Re: Fatigue - Is there anything to help?
Post by nelson1600 on 05/26/11 at 09:26:38

Thank you for the information Susan; I really appreciate it. My conversations about the fatigue with my allergist have not netted any results.

He is very new to the treatment of SM (I am his 1st and only patient) and while he is open I can tell at times he either does not believe me or does not fully comprehend exactly how certain things impact me and although it can be frustrating, I understand why; he is learning as we go just like me.  Unfortunately there are not many allergists in my area that have any more knowledge than he and because he is open to discussion I do not want to blindly change physicians.

I am supposed to be scheduling an appointment to go in for a bi-annual checkup and blood work; I will discuss this with him.  I am hoping that I can find something that will not be problematic and that will hopefully not have to be taken daily; but on an as needed basis.

From what I read; and I will have to re-read it later to make sure; if it were not something that created other issues; this sounds like it might be something that would help.

I really appreciate the information and hope that things continue to look up for you in your search for answers.

~Lucas

P.S.; about a 45 minute nap helped but the when it kicks in; the grogginess lingers on all day.

Title: Re: Fatigue - Is there anything to help?
Post by nelson1600 on 05/26/11 at 09:33:57

Ramona, I am sorry I guess you posted as I was responding and I did not notice.

That makes sense; one of my weaknesses is that I am not much when it comes to understanding how medicines work but I am trying to learn.  I was on the Singulair twice a day for about 6 months and the fatigue was still there.  The fatigue is one symptom that I have struggled with finding some kind of a solution for.

Now I have been off Singulair for about two months and I admit that the fatigue is coming on a little more frequently; so I think the best thing to do is to fight it until I get back in to see my allergist next month and discuss Singulair with him in more detail; I think I feel more comfortable trying that first.

Thank you for the info; it really is a help -- in fact I think I still technically have refills on the Singulair available through my CVS; I may call in a refill and try a slight increase in dosage (I was on 10mg twice a day before).  Do you think there would be any issue with upping it to 30mg or should I consult with my allergist first?

Thank you again; it's great to have options :)

~Lucas

Title: Re: Fatigue - Is there anything to help?
Post by Starflower on 05/26/11 at 11:37:13

I take 30mg/day of Singulair.  It hasn't been a problem for me, although apparently it gives some people depression and suicidal thoughts (yikes).  If you felt fine on 20mg then I'm guessing 30mg should be no problem.  My hematologist said that doses as high as 60mg are used to treat severe asthma, even in kids.

I wouldn't increase the dose on your own... ask your doctor.  That way if it helps you can get the higher dose next month too.  Singulair is pretty expensive!  It's not like antihistamines.

Heather

Title: Re: Fatigue - Is there anything to help?
Post by Riverwn on 05/26/11 at 12:55:13

Hi Lucas
I would do what Heather suggested.. with one more suggestion... just take 20 mg a day, as the doctor ordered--but instead of 10 mg twice a day, try 20 mg in the morning (only). You expect to be tired at night, you need the energy in the morning. See if that helps.
hugs
Ramona

Title: Re: Fatigue - Is there anything to help?
Post by Lisa on 05/28/11 at 08:13:56

Hi Lucas!

I'm sorry to hear you are going through so many issues with fatigue.  It's awful isn't it?!  I was one who has improved greatly with Singulair!!  It was amazing to feel some energy once again and it helped to reduce greatly my anaphylaxis.  I go through episodes of tremendous exhaustion at times and we're trying to figure out what these are now.  They seem to be episodes of constant hypotension or borderline hypotension but I also get bradycardic on top of it and so we're waiting for a cardiovascular investigation to deal with this.  So many things to weed out in the meantime!!  

But it is awful to take a nap or to sleep all night long and wake up as exhuasted as you did when you laid down!!  Oh, how much loneliness for the days of  refreshing sleep!!!   :-/

I hope things are well with you, however, in the meantime.  Keep pushing with those doctors, Lucas.  You never know when you are going to find that key doctor and where he'll be so don't give up hope, my friend!!  

Hugs!

Lisa

Title: Re: Fatigue - Is there anything to help?
Post by Keri on 06/01/11 at 21:14:02

Hi I am new to this site and read your discussion on fatigue. I have been suffering since 2006 but did not have a full blown reaction until 2008. Fatigue was my biggest set back as the other symptoms improved. I had Ross River fever in 1999 which symptoms include severe fatgue and tiredeness. I fell pregnant later that year and was worried about medications that would hurt bub. I friend who is a naturpath put me on to sprilulina it is all natural and derives from a fresh water plant. it includes chlorophyll, carotenoids, vitamins and minerals etc and is high in proteins and essential amino acids. It is free from colors and preservativies and comes in low allery formula.
He told me it is completely harmless for me and baby and I can take as many as needed.

I worked then and helped me to keep working as well. I decided to take it again last year when I kept falling asleep. I have found that it does help and does not effect the mast cell. I also tried a general tissue salt spray tonic that goes under the tongue it is a homeoepathic medicine that can be bought over the counter. it states it is for fatigue and exhaustion. I take it when i am driving and  Just if i cannot rest.
As like everything just because it says its safe it does not mean Mast suffers will not have a reaction so try a small amount to start with and see how you go. If you can tolerate the spirulina it is a fantasitc supplement and can help when you are not eating the best. It too should be able to be purchased over the counter and even in can be found in chemists and large chain food stores.

Just in interest I also came across another tissue salt called fobrositis..it helps give releif for muscular pain and inflammation and fibrositis. I found it also useful for minor pain especially in my face. It requires that you again place the tablet under the tongue and allow it to be absorbed rather than chewed.

Try and drink plenty of water as well. A thing to remember also is that sometimes you just have to sleep. When I struggle against  it to much I find I suffer more. I just have to accept that somedays are out and store my energy for important things like spending time with the children and planning a day out shopping. If I dont stop and rest I find I cannot enjoy any days .
So plan your week as best as possible and if you have a special occassion or a big job you would like to accomplish try giving into the sleep, relax and dont fret you will all those yucke jobs wont go away they wait for you.

Hope you dont mind my input
kind regards
kerri

Title: Re: Fatigue - Is there anything to help?
Post by nelson1600 on 06/02/11 at 02:50:22

Thank you all...  Lisa and Keri I am sorry it took me so long to log back in and respond to your input.

That is what makes having a place like this to come so special and it is great to see so many people have found it.

I had a conversation about this topic last Friday with my doctor's nurse over the phone and she spoke to the doctor about all of the information I had received at that point.

As for the nuvigil / provogil; she stated (called me back yesterday after speaking with my doctor) that he would not be the one to prescribe such a medicine and I reiterated my concerns about them anyway and how I hoped that switching back to the singulair with an increased "single" dosage might do the trick.  After speaking with her I think we are all more comfortable with the Singulair.

Does anyone know about Xyzal?  I think this could be part of the "problem"..  As an example; two nights ago I forgot my medicine before going to bed (I very rarely do this; my wife and I both have reminders on our phones and I keep my medicine in the kitchen where none of the kids can reach it; but it is in plain sight).  Yesterday I woke up like I "used" to; at 6:00am what I used to call my natural alarm clock kicked in; I was up, ready to go, and I had energy "ALL" day long...

However last night I took my medicine at night like I am supposed to and I had trouble waking up this morning...  8:00am rolled around and I struggled and fought myself out of bed and I've been up for about 40 minutes now (1 cup of coffee) and I still want to go back to sleep :) -- except I can't because I have things to do and a 3 year old who wants my attention...

I am a creature of habit and I go to bed every night at 10:00; set the sleep timer on the t.v. and turn on the news...  I finally decided to read some information about the Xyzal I am taking and I found the following information.

Xyzal Info: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000405/

Anyway, everyone has been great on this topic.  I am going back in on 6/17 to see the doctor and do blood work.  After speaking with his nurse we have decided for the time being to not make any changes until I have had an opportunity to sit down with the doctor face to face with my "LIST" of problems and questions and go from there.

After reading more about the xyzal I don't think it's my "WHOLE" problem with the fatigue but after the accidental experiment over the last two days I definitely think it's part of the problem.


~Lucas

Title: Re: Fatigue - Is there anything to help?
Post by Riverwn on 06/02/11 at 08:06:09

Hey Lucas!
I would give you one suggestion here for the xyzal. If it is causing you that much problem, I would be concerned too--but you have to ask yourself, do you need the xyzal to prevent reactions? If you do, then try taking it a bit earlier in the evening so you wont feel so tired in the morning. If that doesnt help, then try a few days off of it so you can see a true difference and tell your DR about it at your next appt.
Hugs
Ramona

Title: Re: Fatigue - Is there anything to help?
Post by nelson1600 on 06/02/11 at 08:13:06

Ramona you are so awesome; yes, I actually take it as early as 6:00pm with my second regiment of zyrtec and zantac; I just couldn't help but notice such a major difference in energy the morning after I forgot to take my meds.

I know before I went on it I still fought with fatigue but the more I think about it; it has been worse practically as long as the doctor took me off of singulair altogether.

I'm not going to quit taking the Xyzal because we are in our season of "HEAT", increased insects (mosquitos mainly), and pollen counts (which seem to have a major impact on my reactions); but this is definitely going to be a "MAJOR" area of conversation for the doctor and I on 6/17 :)

I think you helped give me the proper insight when you mentioned the singulair; I'm hoping the doc can find a different H2 Blocker that will not cause the level of drowsiness and keep me on the singulair.

Thank you so much for the response -- BTW; "How Are You" :)

Title: Re: Fatigue - Is there anything to help?
Post by Lisa on 06/03/11 at 03:53:34

Hey Nelson,

Your doctor's wrong about Xyxal being the same as singulair!  Singulair is a leukotreine blocker not an antihistamine and it's made an incredible improvement in my quantity of anaphylaxis as well as given me back a LOT of energy!  I've found if I do without it, I have more anaphylaxis again!!  And my energy level drops NOTICIBLY!!!

Put the singulair back into your regimine, Nelson.  

As to the xyxal, I'll bet that's your culpret for sleepiness.  Some of are really sensitive to these meds that cross over the blood/brain barrier and most of those antihistamines are of 12 hour duration!  This is why it's creating problems for you.   And again, where is that MC stabilizer in your meds?!  

Talk with your doctor ask him to adjust your meds taking xyxal out and putting perhaps Allegra in or boosting your Zyrtec instead.  Let the Zytec replace the Xyxal if need be.   Then, ask your doctor to put you on Cetotifeno.  You are badly needing this and being that it's an MC stabilizer it will serve the two needs you have, that of stabilizing those MCs of yours and that of an extra antihistamine.   It's an H1 blocker which crosses the blood/brain barrier, so it will make you drowsy, but in taking it only at night, it won't look you out and it will give you that extra action of dealing with the MCs in the brain.  And others are finding how to get this medication and it's not horrendously expensive.   It's cheaper than gastrochrom and does the same thing being that they are both MC stabilizers.

I hope your consult goes well!!  Let us know how your doctor works with this situation.

Lisa

Title: Re: Fatigue - Is there anything to help?
Post by Mike on 06/03/11 at 08:36:03

Just my 2 cents.  I have administered xyzal to patients in my various clinical rotations.  It is a 3rd generation H1 antagonist generically known as levoCETIRIZINE. Very little crosses the blood/brain barrier really. The literature I read before administering said there has not been reports of drowsiness any worse than Zyrtec, which makes sense. While I haven't personally tried it, it is a H1 antagonist with high efficacy.  Perhaps we should keep this one in our arsenal.

Title: Re: Fatigue - Is there anything to help?
Post by nelson1600 on 06/03/11 at 10:08:05

Lisa and Mike, thank you both for the information.

This is where I am trying to get better with this situation (understanding the medications).

I am confused because I finally looked up some info on Xyzal and the info only states that drowsiness is caused by alcohol consumption and overdose.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000405/

I am taking the med as prescribed and I've never been a HUGE drinker and since all of this started have distanced myself completely from any alcoholic product.

I just know that after forgetting to take it a few nights ago I woke up the next morning and felt like my old self (in reference to the fatigue).

I should also note that while I have been on this medicine my reactions have not been as severe, but I still have them daily (flushing, skin writing, stomach cramps, diarrhea, brain fog, respiratory, rashes, and etc).  So I'm not sure that its working.  Other than the Xyzal I am currently only taking zyrtec and zantac in conjunction with it.  (this is another area of discussion I intend to spend time on with my Doctor on the 17th).

Current Meds:

Morning - 300mg Zantac, 10mg Zyrtec

During the day and based on reaction type and severity I take an additional Zyrtec.

Evening - 5mg Xyzal, 300mg Zantac, 10mg Zyrtec

Ok, so the short and sweet of my situation is that I am on a regiment of pills and my reactions are still and have always (even with singulair added) been present on a daily basis.  The skin writing and flushing got better for a very short period of time; but not for long.

I know I'm venting a little; but I just get so confused at times :)

I'm concerned because I had hoped that the meds would suppress my reactions unless I inadvertently ingested or put myself in contact with something that would cause a reaction; but this has not been the case.  At least half of my week is spent indoors and the rest is a mix of running errands, attending meetings, etc...

I am going to talk to the Doc about Lisa's point of the MC stabilizer; but in reading Mikes post I am confused because it sounds like that is what the Xyzal should be doing.

When all of this started I was prepared by everyone here and the forum for an adventure into "Mast Cell" land; but I am beginning to think I did not fully wrap my head around how much of an adventure it would be.

You are all so wonderful; I'm going to have to prepare for an in depth conversation and try to get everything straight.

Sorry about the vent; I hope everyone under stands :)

Title: Re: Fatigue - Is there anything to help?
Post by Starflower on 06/03/11 at 10:16:55


nelson1600 wrote on 06/03/11 at 10:08:05:
When all of this started I was prepared by everyone here and the forum for an adventure into "Mast Cell" land; but I am beginning to think I did not fully wrap my head around how much of an adventure it would be.

:D :'( ;D >:( :o

It's like the Chinese curse... "May you live in interesting times."

Title: Re: Fatigue - Is there anything to help?
Post by ruth on 06/03/11 at 14:18:19

Nelson my understanding is that Xyzal is a new form of zyrtec, thought to be more effective (comes in a ready to act forrm, whereas zyrtec your body has to convert, I think),. However they are both HI antihistamines, which mask the effect you feel from the histamine that has been released, rather than stopping the release before it happens - this is what the mast cell inhibitors like gastrocrom and zaditen do.  Zyrtec, and I expect xyzal, do cross the blood-brain barrier, even though they are referred to as non-drowsy. I think that  is a matter of 'it's all relative' - they ar not sedating like the 1st generation antihistamines, but they can cause drowsiness because they are crossing the b-b barrier.

Title: Re: Fatigue - Is there anything to help?
Post by Mike on 06/03/11 at 15:31:15

although all H1 antihistimines cross the bbb cetirizine has roughly half the affinity to cross and when it does it is very H1 receptor selective (when compared to first generation H1 blockers). In studies there has been no cognitive impairment related to this class of drug.  Drowsiness is also one of the most frequently reported side effects of medications in general.  I guess it's all relative.

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