Just wondering if anyone here has been or is on currently off work for prolonged periods because of CH?

I have unable to work since this cycle started August 4th.  Between of the pain and the cognitive mess that I suffer as a result, I am unable to manage my position as a case manager with social services.  Regular sick leave is about to expire and I have had to apply for long term disability while I wait in anticipation for this cycle to break.  I have never had one go this long ever and am worried about going chronic.  :'(

The severity of the pain has decreased with increased doses of Verapamil and Topomax but the cognitive effects (confusion, lack of focus and concentration) would not allow me to return to my very demanding regular work. 

I am aware of the frequent comments here about the mental effects of the Topomax but have seen no difference since starting it.  The problems existed well before it was prescribed.  :(

In any case, I am curious to see whether or not others have been forced off work.

G

In 2006 during my last cycle before the one that just ended a few days ago, I worked as an account manager for a large electronic medical claims clearing house.  It was also a position that you had to be very alert, organized, ect...ect.

About 6 weeks into the cycle I was so wrung out from sleep deprivation that I could no longer effectively function in the position and had to go on short term disability for almost 10 weeks.  I didn't pay that well but it was a danged site better than all of nothing.

Dallas Denny

about for years ago I did go on short term disability. Due to the fact, I was not getting any sleep, was always  on my tank at work. My boss was the one that suggested it. Since then never have. I Just learned to manage it. Also, jumping through all the hoops to get it approve is a hassle. Insurance companies suck sometimes.   
Jrcox

Even though I have considered disability many many times in the past,   I have always found that the best thing to do is to try and keep up with your life.  Once I accepted that the cycle may never end, and I might be chronic,  I was always able to function better.
  Even though it sucks,  it is the hand we were dealt.  You have to have a life outside of CH.  If you let it it will pull you very far into despair and depression.  It really is amazing what a change of attitude has given me in the past.

  Please try to keep on truckin.

Hugs,
Christine :-*

Hello G.
I had been working part time for the last 2 years (working around my clusters) and was "down-sized".  I do not have enough hours to qualify for EI.  A friend works for CPP (Canada Pension Plan) and encouraged me to apply for disability benefits through them.   So after much soul searching (I didn't want to be on disability, but need some money), and pages and pages of applications and signatures and with my doctor's support, I handed in the application.  I just received the notice that I was declined benefits as my disability does not meet their criteria of being "severe and prolonged" .  What !?!?
I guess having these headaches for almost 30 years doesn't count for prolonged??  What about severe?  I have lost 2 jobs because I wasn't able to meet my responsibilities while in cycle.  It's very hard to find an employer with the flexibility to allow someone to work around their headaches.  I may be able to abort a headache with oxygen, but I am still not up to the same level of responsibility during a cycle. 

So my friend is encouraging me to appeal their decision, and I have gone back to the doctor for support.  Not sure how things will work out, but I am going to try. 

CC

I've been on long term disability for roughly 6-7 years. Despite many, many attempts to get back to the work force the clusters make me far too unreliable for any sort of work. It took me a long time to comes to terms with having to rely on someone/thing other than myself.

The problems with your mental focus could be related to pain levels. When I went to the St. Paul's Pain Clinic, the Doctors told me that my problems with my poor mental focus (it used to be quite high) was from the high pain levels caused by frequent clusters.
If you are chronic and no abortives have worked for you then maybe ask your Doctor(s) to treat you as someone with chronic pain, which you seem to be in. At least that way (s)he could send you to a Pain Clinic to learn things like Biofeedback, meditation and so on. It is worth a shot. Hopefully that could help you so you can go back to work.
Good Luck

Paul

Hello,

Great post. I im a eposodic suffer every 3 years. So my work knows well in advance when there coming, during my last 4 month cycle...3 a day, everyday i was lucky to only miss 4 days work.

When i was in cycle, i took the advise of my loving wife every morning. As soon as the alarm went off and i turn off the 02, she would tell me in that loving supporter voice of hers "ARE YOU OK HONEY?? WELL GET UR ASS UP AND GO TO WORK."

        Hope that helps... Coach Bill

Hi,
We have similar issues and doubts here in the U.K.  I am chronic and some days as we all know, living is tough enough, let alone going to work.  With my worsening status, I took long leave and now cannot work.  Although our DWP (state system), lists 'headache, or migraine as a 'disability', you almost always get turned down! So I appealed to my GP and it took a full blown medical examination by the DWP doctors to agree that CCH was for me very disabling and was sufficient to let me have disability pay.  The pay itself is a very low amount, but it 'opens doors' to other disability linked support so it's worth persevering, in the UK at the very least.

My whole body is in real bad shape, and I should have gotten SSI a long time ago, but it was the cluster's that finally got it for me. It is a long process but worth it. I moved to the Philippines where I rent a small 2 bedroom house, have a new wife,baby,and a live in maid to cook clean and do the shopping. at the end of the month I only spend $800.  US  I started Acupuncture here about 1 year after I got here, 2 times a week for 6 weeks, and they went away, now I go once a week. I can eat and drink everything I used to, and still nothing. they only came back when I didn't go in to get treatment for 2 months. Now I have a good life with no more Clusters. 
Good luck to all, and try acupuncture, if it works for you too, spread the word.. I started it to help my arthritis and it did help that too, but I didn't expect the clusters to stop, they did. :D
1 Helpful hint for getting SSI disability in the US. The first time you apply your almost guaranteed to get denied, get a good ssi lawyer, you dont pay unless you win, and even then it is from ssi they get payed. So if they take your case, you know your going to get it.

By definition, if you are an episodic cluster headache sufferer, your attacks will stop. They will also restart.

Don't set yourself up for disappointment by confusing correlation with causation.

No, and for the same about reasons as cherylc. But for a back injury on the job, where American AIG refused to pay for back surgery.

I am so fed up, that I work for myself as little as possible. This limits many things in life, but atleast I don't dance for legal eagles anymore.

Scott Wolter wrote on Dec 15^th, 2009 at 7:38am:

My whole body is in real bad shape, and I should have gotten SSI a long time ago, but it was the cluster's that finally got it for me. It is a long process but worth it. I moved to the Philippines where I rent a small 2 bedroom house, have a new wife,baby,and a live in maid to cook clean and do the shopping. at the end of the month I only spend $800.  US  I started Acupuncture here about 1 year after I got here, 2 times a week for 6 weeks, and they went away, now I go once a week. I can eat and drink everything I used to, and still nothing. they only came back when I didn't go in to get treatment for 2 months. Now I have a good life with no more Clusters.  Good luck to all, and try acupuncture, if it works for you too, spread the word.. I started it to help my arthritis and it did help that too, but I didn't expect the clusters to stop, they did. :D 1 Helpful hint for getting SSI disability in the US. The first time you apply your almost guaranteed to get denied, get a good ssi lawyer, you dont pay unless you win, and even then it is from ssi they get payed. So if they take your case, you know your going to get it.

SSI or SSDI?

            Potter

Scott Wolter wrote on Dec 15^th, 2009 at 7:38am:

I should have gotten SSI a long time ago, but it was the cluster's that finally got it for me. I started Acupuncture Now I have a good life with no more Clusters.

It seems since it was clusters that clinched SSI for you, and since acupuncture treatments you have a good life with no clusters, why would SSI still apply, if it is?

Hi, I applied for ssid to start with and was denied 2x, I got a ssi lawyer and got full ssi.  Yea The ch was what I think pushed it over the top, to get ssi but, that isn't my only disability, and, as we all no with ch is just cuz it is gone today,,,I can come back and bight you any time. I already lost my house, and most everything I had, worth anything. After a car wreck in 2000. So I took my back pay,Packed up 2 bags,got a pass port and moved to the Philippines. I think it was the best thing I ever did, NO MORE SNOW.   GOOD LUCK TO ALL
   Scott

So, let me understand what you are saying.  You had clusters, got SSI, moved to the Phillippines, got acupuncture and you are now headache free?  So, you don't think you can work because they *might* come back?  If the acupuncture is keeping them at bay while ou don't work, why wouldn't they keep them at bay while you do work?

§416.215 You leave the United States.

You lose your eligibility for SSI benefits for any month during all of which you are outside of the United States. If you are outside of the United States for 30 days or more in a row, you are not considered to be back in the United States until you are back for 30 days in a row. You may again be eligible for SSI benefits in the month in which the 30 days end if you continue to meet all other eligibility requirements.

By United States, we mean the 50 States, the District of Columbia, and the Northern Mariana Islands.

[47 FR 3103, Jan. 22, 1982. Redesignated at 61 FR 10277, Mar. 13, 1996]

        You are bullshittin us.

             Potter

Isn't the Philippines, and Northern Mariana Islands the same thing?

Looks like it on a map.

Mac_Muz wrote on Dec 20^th, 2009 at 4:36pm:

Isn't the Philippines, and Northern Mariana Islands the same thing? Looks like it on a map.

  Not hardly. Bout a thousand miles apart

          Potter

Disability for cluster headaches???  I doubt it seriously!  My sister in law is a 31 year high ranking social worker at the Social Security System in the U. S. and she laughed at that.  That is what she does everyday and no one in my family ever considered it or thought it even possible due to headaches.  She certainly would have encouraged us to do so as one of us was her husband.

We are all episodic, so I cannot speak for chronic headache sufferers, but I still think it is a long shot according to what I hear from her all the time about it.  Also, she has mentioned it has really gotten harder recently to qualify.

It is a terrible thing to have episodic clusters and I hate it, but it is not a permanent long term disability.

In Jan 2003 I was layed off from work due to a staff reduction (yeah right been in autoparts selling for over 20 years but only been at that parts store for 6 years). The autoparts company bought out another and moved people to my store that had alot more time than I did so I had the lest time at that place. I was full time but always was the first to go home early when work was slow because of my clusters. When they let me go they asked if I would like help because they knew I was going to try for SSD. I declined but used them as a reference when I applied. I collected unemployment and after 3 days it ended I was granted full SSD. It took over 10 months. I had every record of Dr appointments, ER visits, surgery done at Mayo Clinic (had trigeminal nerve cut in May 2002), medications tried that failed and the current ones I was on that wouldnt help me get a job because of the side effects and they were narcotics, and statements from co-workers and main office about my suffering while at work. That helped me the most was the folder with all that information I had collected. The people at SSD said they would interveiw me every 2 years but I havent had to do that in the over 6 years of being on SSD. Thats about all I can say about getting help with SSD. Terry

gore2424 wrote on Dec 20^th, 2009 at 5:36pm:

In Jan 2003 I was layed off from work due to a staff reduction (yeah right been in autoparts selling for over 20 years but only been at that parts store for 6 years). The autoparts company bought out another and moved people to my store that had alot more time than I did so I had the lest time at that place. I was full time but always was the first to go home early when work was slow because of my clusters. When they let me go they asked if I would like help because they knew I was going to try for SSD. I declined but used them as a reference when I applied. I collected unemployment and after 3 days it ended I was granted full SSD. It took over 10 months. I had every record of Dr appointments, ER visits, surgery done at Mayo Clinic (had trigeminal nerve cut in May 2002), medications tried that failed and the current ones I was on that wouldnt help me get a job because of the side effects and they were narcotics, and statements from co-workers and main office about my suffering while at work. That helped me the most was the folder with all that information I had collected. The people at SSD said they would interveiw me every 2 years but I havent had to do that in the over 6 years of being on SSD. Thats about all I can say about getting help with SSD. Terry

I am sorry for your suffering and failure in finding maintenance for your headaches.  Do you still have them?  I am curious as to why you took narcotics for cluster headaches.  If disability is what you needed and it has improved the quality of your life in order for you to be more successful, then I am glad it worked out for you. 

Potter, I ain't Bs'n anyone,, Ha ha, But I did get my ssi, and yes you are allowed to move to many countries except a few, most of them end with Stan, and I wouldn't want to live there. I came to the Philippines back in 1984 in the Marine Corps, and loved it,so I'm back. As for the other question on why I don't go back to work? I am in bad shape, Neck was broke in 2 places, back broke 2x still need 1 more metal hip, just to name a few. Living here, if ssd wanted to come and check on you, they would have to send someone to your house, they do have an office here, but it is a 1 hour flight from there office, and even if I was BS'N  them, chances are I would never see em. I was, before the months of acupuncture, a chronic, 1-3 a day for 3 years, I still Pray there gone for good. Im just saying if your body is in bad shape already, like mine, CH can work to get your ssi, or ssd. Just don't give up, like I said, apply the first time, you will get denied, ten if a ssi layer will take your case, your almost got it in the bag. If your chronic like I was you cant work and do a good job, I couldn't, and I owned my own business. I payed a LOT of tax through the years, and getting SSI a little early kept me from turning 50 and living at Mom's house. When I got it I was at the end of the rope, and now, I'm starting my life over. There is a way out. If you can get ssi, I say get it, before Obama spends it.

Are you getting SSI or SSDI?  There is a big difference between the two.  If you paid in enough over the years, you should be getting SSDI, not SSI.

SSDI requires a certain amount of credit earned for prior work, whereas SSI is based solely on financial need, regardless of prior work.

To answer your ? Joni
I am still on SSD and still have a cluster 24/7 at a 3-4 pain level. Current meds keep me there at that pain level most of the time. When clusters get too bad I take a 10mg morphine shot. After getting a shot after 15-20 minutes I can drive go to the store do some yard work. NOW please let me say that using narcotics isnt the way for everyone its just my choice that I have been on for over 4 years and it helps me. Right now to try and get and hold a job wouldnt be fair to me or any co-workers. I do housework and even watch my granddaughter a few times a week for a few hours. Terry

gore2424 wrote on Jan 3^rd, 2010 at 5:37am:

To answer your ? Joni I am still on SSD and still have a cluster 24/7 at a 3-4 pain level. Current meds keep me there at that pain level most of the time. When clusters get too bad I take a 10mg morphine shot. After getting a shot after 15-20 minutes I can drive go to the store do some yard work. NOW please let me say that using narcotics isnt the way for everyone its just my choice that I have been on for over 4 years and it helps me. Right now to try and get and hold a job wouldnt be fair to me or any co-workers. I do housework and even watch my granddaughter a few times a week for a few hours. Terry

Good luck to you!  Enjot those grandkids!