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Topic: Help for my Husband (Read 487 times) |
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Jazsaunt
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I am new to this sight and have actually learned quite a bit about CH from your message board. My husband is about 3 weeks into his first bout. Feels like we have been going through this a lot longer though. He has anywhere from 2-4 clusters a day. I haven't found any patterns or triggers really except for the one that comes after REM sleep starts.
Right now Bill (husband) is on 80 mg. of prednisone and 320 mg. of verapamil. The verapamil I think helps stop them from becoming severe sometimes, but he feels so drugged, which I'm guessing is from the prednisone. He is always saying that his head feels so funny. He has a hard time keeping track of his medicine and seems really confused at times. Not sure if that's from all of the pain and sleep disturbances or the medicine, heck maybe it's everything combined.
They also started O2 yesterday. He is on 8 liters up to 15 min. a time. The person who delivered the O2 said that he isn't actually getting 100% oxygen through this type of mask. This morning it helped, but woke up 1 hour later with the pain starting again. This happened twice before he decided to take the immitrex. Does he need a different mask for this to work right? The guy said something about a bag that is needed for 100% O2.
Something else that will be a first is lithium. He begins taking that tonight @300mg. (He works 3rd shift so that will be his morning.) I'm a little nervous about beginning this, but haven't read anything bad about it on this sight so far.
Any information or comments you want to share would be appreciated. I feel so bad for Bill and all of you who have to suffer through this. God Bless!
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Not4Hire
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...WAS PF since Oct.'02, but ...oh my...(CBusters)
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Re: Help for my Husband
« Reply #1 on: Jul 14th, 2002, 6:07pm » |
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Hey Jazsaunt.....sorry you are here....glad you found us....lots of information here...REAd READ READ.....can't comment on any thing but oxygen, cause that's all I use.....but it sounds like your hubby isn't using the right mask....the correct one is NON REBREATHER (with the bag).....read up on this on this site and the OUCH site.....all ya need to know is included at no extra charge...... ;D
...hope you find your "key" Bill......take the clusterTEST and push them buttons at LEFT........we're here to help and support ya..... best .......Steve
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Mantra: This will NOT kill me...This will not KILL me... This will not kill ME...
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BobG
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Re: Help for my Husband
« Reply #2 on: Jul 14th, 2002, 7:20pm » |
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Thanks to Ueli we have a picture of the mask that Bill needs.
It's called a non-rebreather mask. If 8lpm flow rate works for him then leave it there. Otherwise he may want to increase the flow to 10 - 12lpm. Also, cut the head band off the mask. That's because if he falls asleep with the mask on it will fall away from his face.
Click on these 2 addresses for mask picture.
http://www.salterlabs.com/products/oxygen_masks/high_conc.htm
http://www.jlenterprise.com/nrbmx.html
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Stay stressed. Never relax. Never sleep. Ever.
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Jazsaunt
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Thanks so much for your replies. I'm going to call the Dr. today and inquire about his oxygen mask. That isn't the one he has. I hope that makes a difference. He called home this morning complaining of feeling really drugged. Do you know if the lithium will have that effect on him for a while? I know the prednisone does it to him for sure.
I showed my husband this sight yesterday when he got up. So on nights he is up and at home he can get with all of you. By the way my name is Michelle, I forgot to sign my name before.  Thanks again for the info. on the mask.
Michelle
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Linda T
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Re: Help for my Husband
« Reply #4 on: Jul 15th, 2002, 8:13pm » |
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Hi Michelle. Sorry Bill (and you) are going through such a rough time right now.
I'm also sorry to say that I can't really comment on the use of O2, Verap or Lithium since I've tried none of them! I really just wanted to welcome you both aboard.
I will say that it sounds like you've got a doc/neuro who knows what he/she is doing. O2 seems to be the abortive of choice around here and the verap/lithium combo also seems to work well for alot of folks. You're both very lucky to have found such a knowledgeable doc.
As for feeling drugged - I can relate. Seems to go with the territory. I think you're right to say it's a combination of drugs and sleep deprivation.
Again, welcome aboard. Good luck and wishing you all PFDAN always, Linda T.
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What a long, strange trip it's been!
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Jazsaunt
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Hi all. I wanted to update you about Bill and ask another question. His clusters have seemed to stop. He uses his O2 when he feels anything coming on. I'm still waiting for the Dr. to call back about the mask. I can't believe no one called me back yesterday. He is also down to about 50-100 mg. of immitrex a day which is really good. He has been complaining of thumping headaches that sometimes leave and come back. The other night it was an all nighter. Is that what shadows are? I'm hoping he is winding down and phasing out of the clusters. Let me know what you think.
Michelle
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RichardN
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Re: Help for my Husband
« Reply #6 on: Jul 16th, 2002, 12:07pm » |
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Hi Michelle & Bill
I am getting ready to up my Verapamil to 420mg. I use 02 as abortive - - - works best for me when shadow first appears. "Shadow" usually refers to that starting nagging "tension-type" (start rubbing temple) pain, which increases , then starts spreading; forehead, eye, ear, teeth, neck. I can usually knock out a shadow within ten minutes. If really exhausted, and the beast gets a good hold before I can wake up, the 02 isn't as effective. I keep an E tank by the bed and carry a B tank with me everywhere.
Have you identified any triggers? Alchohol was (and is) a definite trigger for me. A beer, shot of brandy. or few ounces of wine will trigger an attack for me within 20 min. Not true for everyone, but many of us.
Heat or cold? Folks are split on this - - different strokes for different folks. Heat works for me - - if getting into KIP 6+ or so, I will immerse in water as hot as I can stand (some like showers) til ch abates. For less severe, empty a bag of rice in a cotton sock and heat in the microwave - - molds to your face and retains the heat while you're heating another sock. If cold works, face in front of the airconditioner or bag of frozen cranberries or other moldable frozen fruits/veggies.
Also water/water/water. Avoid pigging out at mealtime - - large meals will sometimes trigger an attack for many (including me)
Hope some of this helps. Read, read, read - - - there's help here - - you've found the calvary. There's always someone else awake.
PFDANs Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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The mad viking
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Re: Help for my Husband
« Reply #7 on: Jul 16th, 2002, 5:12pm » |
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imitrex-shots combined with oxygene "minimum 10L/min with rebreathermask" rules as i see it as a painkiller
verapamil retard as a preventive or what you call that in english
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| « Last Edit: Jul 16th, 2002, 5:13pm by The mad viking » |
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Always Look on The Bright Side of Life
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MarkHW
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Re: Help for my Husband
« Reply #8 on: Jul 16th, 2002, 9:03pm » |
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Welcome... sorry you have to be here!
Lithium made me really dizzy for the first couple days, but then wore off.
Prednisone comes and goes... I feel tired then ok, and back again.
Imitrex injections are the best! They abort 99% of my clusters.
Mark
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The clusterhead formerly known as williamsmh.
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Ohmsx
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I'm too new to welcome anyone to the board, but wtf, welcome to the board.
I've just rid myself of the beast this week and thought I would share what worked for me:
Maxalt- (orally disintigrating) at the first sign of CH, usually at night combined with heavy doses of nicotine and ice while waiting for MLT to kick in.
For day attacks (I'm aware this doesn't work for everyone) I used heavy cardio- exercise. Running or jumping jacks worked best for me, bicycling worked but took longer. If your husband tries this, tell him to keep working out through the pain. It's not easy, but it does work eventually. There were times when I thought it was just a waste, but around the 150'th jumping jack or so, all of a sudden the pain would vanish.
If this doesn't work, my advice (I'm no doc) would be to read all the topics in this section, and try the non-side effect treatments first.
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Jazsaunt
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Thanks for all of your replies...Linda T, Richard, Mark, Svenn, Bob G., Steve, etc. You have all been such a big help. I now have a better idea of what I'm looking at, and how to help him. Bill wanted me to tell you all thank you from him as well. We plan to stay here even after my little clusterhead (Bill) gets better. 
To answer Richard's question about triggers, I haven't found anything yet. He doesn't drink, and I haven't noticed anything from him smoking. I'm going to pay closer attention to big meals though and see if that may be one. Bill wants to eat all of the time it seems. Not sure if that is from the verapamil or prednisone. Also plan to try the heat thing you were talking about if and when things get bad again.
We finally got the rebreather mask yesterday. He seems to be shadowing on and off during the night at work. Haven't had any bad clusters for a few days now. The medicine and O2 seem to help. They are going to up his lithium again friday. He also hasn't woke up with a CH in 2 days!!!!  That is when he started the lithium. I'm hoping the higher dose will take away the shadows at night as well.
Does anyone know much about sleep apnea? I heard that it can cause CH. Bill sometimes chokes in his sleep and wakes himself up. He can also snoar loudly at times too.
Wishing you all PFDAN.
Bill and Michelle
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Opus
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Re: Help for my Husband
« Reply #11 on: Jul 19th, 2002, 8:01pm » |
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Bill and Michelle, Bill you are really blessed to have a wife who can help with the Drs and the meds. Remember that when are PF. I have sleep apnea and went years before I could get a Dr to treat me. The symptoms are fatiuge, memory loss and bone and joint pain. I have been using a cpap for 6 months and was just about recovered untill this cycle hit. I found that I had undiagnosed CH's in the past but the pain was only a 5. This cycle with the cpap started with a 10 that sent me to the er by abulance. I can't tell you that treating sleep apnea will help but It would be a good idea to get a sleep study done. Sleep apnea can eventually kill you. Meds can also make a mild case worse so you should talk to your Dr. I was using breath rite nasel strips before the cpap and they helped some. Paul B.
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Zed-Zed-nine plural-Zed alpha,
There is no place like home.
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Jazsaunt
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Re: Help for my Husband
« Reply #12 on: Jul 19th, 2002, 11:23pm » |
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Thanks so much for your reply Pjbgravely. People here are such a big help, and we want you to know how much that means to us. I wondered about those breath strips, but never brought it up to Bill.
Can I ask where you found your pic of Bill the cat, and how you put it on here? Bill would love to have something from Bill the cat, it's one of his favorite characters. Thanks again for the reply.
Bill & Michelle
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Opus
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Re: Help for my Husband
« Reply #13 on: Jul 20th, 2002, 9:32am » |
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Bill and Michelle, Your welcome , glad to be of help. To put a pic on your post goto the top of this page and click on profile. You then should be in edit profile . Go down to the message/picture section and check the I have my own picture box. Then type or paist a URL. You can use this one http://alcyone.cc.uch.gr/~kosmas/pics/billcat.gif or find anouther one on a web site. Bill the Cat has always been my favorate cartoon caracter and now more than ever I feel like him. His bulging eye looks like he is haveing a very bad cluster indeed. many PFDAN Paul B.
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Zed-Zed-nine plural-Zed alpha,
There is no place like home.
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Jazsaunt
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Hi Paul. I used the url that you sent me. Thanks a bunch. I tried to find other pics of Bill the cat, but wasn't able to find any as good as yours. I'll search some more later. Thanks again.
Michelle & Bill
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The mad viking
CH.com Alumnus
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Always Look on The Bright Side of Life
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Re: Help for my Husband
« Reply #15 on: Jul 22nd, 2002, 3:53am » |
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Snoaring is my middle name at night my wife told me.But that do not give me cluster.
Your husband should stay away from oilbased paint.Thats a huge trigger
Under cycle that goes for alcohol too.Specially red wine.
some stuff like the factorys put in our food to
nitrit is a stuff you should look out for.thats a trigger.i could have helped you more if i know the right words in english.
I use 5-6X120mg Verapamil retard daily when in cycle.imitrex-shots combined with oxygen"minimum 10L/minute on a rebreathermask
Prednisolone at startdoze 80mg for 10 days,then step down like this for a 3 weeks periode."60-40-30-20-10-5/day.That helps me a lot
Take care friend
Svenn
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| « Last Edit: Jul 22nd, 2002, 3:59am by The mad viking » |
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Always Look on The Bright Side of Life
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Warren
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Hi, I am new to the site but definitely not to the dreaded CH. I use the O2 with great success. The key for me is to use the O2 at first sign of oncoming CH. If it has not worked in the first 10-12 mins., I will discontinue use for time being. If I wait till headache is full blown O2 usually not effective. The therapist where I get my O2 told me to ru  n tank full open on 15L. With mask they suggest on this site. I have tried many other drugs to no avail. Lithium is one that will usually break up the cycle. I do my own personal modifications when taking lithium. Imitrex will work for me usually but not as quick as O2 and it makes me feel quite strange. I go to the Chiropracter quite often and do get quite a bit of relief from him but nothing permanent.I am also a longtime 3rd shifter, so I can feel for you husband and you. Remember be strong and never go anywhere without O2!
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