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Dealing with DHE

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#1 Mon, 13/04/2015 - 01:45
EricH
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Last seen: 5 years 11 months ago
Joined: 26/02/2014 - 15:13

Dealing with DHE

Hello everyone.

I have a few suggestions for those having DHE IV treatment.

This is of course just based on my own experience but it might just help - especially for those new to the drug. 

First, a bit about my background. Suffered chronic CH for 13 years, average 2-3 a day. Been through all the meds. O2 helps but rebounds are now more of a problem. Have regular GON + SON. Waiting for ONS. Have a lot of other health problems so any CH relief is a big deal, as it is for all of us.

DHE gives me that much needed relief. Usually I get around 2-3 weeks good relief. By week 5 or so I am back to base.

BUT - DHE IV is a powerful drug. Over the years I have had it the treatment regime has improved a lot. The anti-nausea drip before each dose now helps a lot as do the domperidone tablets - INSIST ON TWO tabs. You will be written up for 2 but sometimes the nurses just bring one (or none). If the nausea is still bad ask for cyclizine - it will help.

The main thing is - take it slow. The anti-nausea drip and flush before each DHE take maybe 30 minutes. The post-DHE flush can take 15-30 minutes. The DHE itself is pushed through at a rate that you can deal with. The pump is usually set at 50 to start with. This will take 2 hours to go through so you are looking at up to 3 hours total. 

3 doses a day - in QS they are at 7am, 3pm, and 11pm. You are stuck to that drip for a long time. The temptation is to push up the rate so that you get it all done with quicker. Making the rate 100 for example will cut the time by half, to an hour.

My own experience is that this is a bad idea. Some people might not have a problem but I used to try to increase the rate each time but I was finding that nausea was worse. More seriously, I find that when the rate goes up, blood pressure goes down and pulse rate plummets. DHE is a vascular constrictor. My heart rate has gone as low as 39 a minute and was regularly in the low 40's - at this level you will feel very poorly. In fact I have had to stay in more than 5 days to recover.

Also, take it easy as the drug is hitting your body hard. Have a week's rest!

Now when I go in I tell myself I am in charge. I keep the rate at 50, move around but rest a lot too. I seem to handle it much better now.

Treat DHE with respect and you should be OK. I know a lot of people don't get any benefit at all and it's not for everyone. But if you do get the IV version remember it can have dangerous side effects. 

Sat, 18/04/2015 - 23:14
Brian C
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Last seen: 2 years 7 months ago
Joined: 26/02/2014 - 14:35

PLEASE DO NOT GET YOUR HOPES UP ABOUT A O.N.S.I. AS AT THE LAST SCOTTISH MEETING THE STATS HAD COME DOWN FROM 75% TO 44% HAD ONE 5 YEARS AGO AND HAD IT REMOVED 8 WEEKS LATER HEADACHES GOT WORSE STILL GETTING 6 A DAY MARRIAGE CRUMBLING AND NO ONE GIVES A SWEET F,A., ABOUT IT

Tue, 21/04/2015 - 11:17
CBailey
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Last seen: 6 years 5 months ago
Joined: 26/02/2014 - 15:13

Eric, I'm glad you have such positive effect from DHE Smile

Arise and be all that you dreamed.

Fri, 15/05/2015 - 00:13 (Reply to #3)
EricH
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Last seen: 5 years 11 months ago
Joined: 26/02/2014 - 15:13

Brian, thanks for the message.

What I get from your reply is something so familiar to many of us - that silent screaming anger that I feel with everything, the pain, the loss of so many things that we just can't talk about.

At least you had the guts to put your raw emotions into your post. I can't even think about sharing some of the worst stuff online.

But I reckon you of all people would understand how I am at the point where I will try ANYTHING. If ONS doesn't work at least I will have tried.

I hope you get some kind of break, somewhere, sometime. 

 

 

 

Fri, 15/05/2015 - 00:29 (Reply to #4)
EricH
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Last seen: 5 years 11 months ago
Joined: 26/02/2014 - 15:13

Thanks Chloe

Sorry it took a while to reply to you and Brian. Life has been a mess the last couple of weeks. Seem to have been at one hospital or another every day. I am wasted.

I had the ONS assessment last week. My neurologist was there which I didn't expect but she made it clear that the DHE can't go on forever. It has the potential to do serious damage to the circulatory system. My other health problems are complicating the situation too.

So surgery is the next step. There are 2 options - Sphenopalatine Ganglion Stimulation (SPG) or ONS. 

The surgeon told me SPG has never been done in the UK but has had a lot of good results in Denmark. Apparently ONS is more likely to help CCH so that may be the first choice. They will let me know.

I hope to give feedback on how it all goes on OUCH - for better or worse!

 

 

Fri, 15/05/2015 - 00:30 (Reply to #5)
EricH
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Last seen: 5 years 11 months ago
Joined: 26/02/2014 - 15:13

Thanks Chloe

Sorry it took a while to reply to you and Brian. Life has been a mess the last couple of weeks. Seem to have been at one hospital or another every day. I am wasted.

I had the ONS assessment last week. My neurologist was there which I didn't expect but she made it clear that the DHE can't go on forever. It has the potential to do serious damage to the circulatory system. My other health problems are complicating the situation too.

So surgery is the next step. There are 2 options - Sphenopalatine Ganglion Stimulation (SPG) or ONS. 

The surgeon told me SPG has never been done in the UK but has had a lot of good results in Denmark. Apparently ONS is more likely to help CCH so that may be the first choice. They will let me know.

I hope to give feedback on how it all goes on OUCH - for better or worse!

 

 

Tue, 09/06/2015 - 09:34
CBailey
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Last seen: 6 years 5 months ago
Joined: 26/02/2014 - 15:13

SPG is less invasive though... less chance of infection... 
The SPG trials are hoping to start this year, at, I presume, different study sites around the UK. 

Let me know how you get on with ONS

Arise and be all that you dreamed.

Tue, 09/06/2015 - 15:25
Harrietjt
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Last seen: 6 years 5 months ago
Joined: 22/10/2014 - 12:47

Hi Chloe,

That is really interesting about the SPG trials starting this year. Where does that info come from? Cos I had heard funding is refused for that op. Do you know where the funding is coming from?

Harriet.

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