Jump to content

Leaderboard

Popular Content

Showing content with the highest reputation on 10/29/2021 in all areas

  1. OH WOW !! I woke up to a blinding CH/KIP10 this morning and thought fuck it, before any abortive or other techniques I will run try the HOT WATER TECHNIQUE. Stood in a bucket of hot water for 5 minutes approx, to just below the ankles, and went from a KIP10 to KIP5 within a few minutes. GREAT !! THANKS A BUNCH, great for instantly lowering blood pressure>..... however KIP 5/ Nasty eye pulling shadow is persisting for some hours now since the hot water, but I can manage to function somewhat with KIP5. Thank you CHF for those interesting treatments / Will definitely be trying that again .....
    4 points
  2. Hi mhowcroft! So happy that you found us. I must agree with the 'You need O2' statements above. I know that requiring O2 treatment for CH has been added to Medicare, so there may be hope in that area. Can you have your OB prescribe it and submit the request? Perhaps your insurance co. has also had to change their requirements for O2 needs. I do strongly suggest that you speak to the anesthesiologist regarding delivery! Epinephrine is well known for kicking off our heads and is usually in anesthesia. They need to know what this will do to you and formulate your meds accordingly. I have suffered my very worst CH post surgery and learned the hard way to tell them, not ask, tell! They should be able to accommodate your needs there. I sometimes wonder if the cycle set off post delivery is caused by the anesthesia as much as hormones? I had severe poison oak with my last one and was denied steroids too. Even though the mess was in my eye!!! It can be and is heartbreaking when they say 'NO!' Get your O2 set up now, either way that you have to do it. You will be grateful for the relief. Then utilize the 'non-busting' methods of treating your hits. Energy drinks, V8 Energy, or coffee. I highly doubt that it will keep you up. Feet in screaming hot water. Ginger tea or candy for 'shadows' - that lingering headache that drives us nuts on occasion. It can be a huge help. Read up, but I don't think it is contraindicated. And they abandoned the whole 'coffee during pregnancy is bad' a long time ago due to lack of fact. Besides, soon you won't be pregnant. I know that you will want to keep these internal additives to a minimum till you see how/if they affect your newborn. If you are getting nocturnal hits, then rest/sleep in a recliner with your heart above your head. You will wake sooner and be able to take action quickly if needed. Personally, I would investigate and not rely just on the dr. input. They can have limited knowledge in a lot of areas and just repeat a mantra to you that is not valid. All the best for you and your little one!!!
    3 points
  3. Pretty good list. Only thing I have to add is hot bath soaks. They seem to abort the easy attacks pretty well for me at least.
    3 points
  4. Regulator attached to the welding o2, and everything works well. Thanks again everyone for the help!
    2 points
  5. Aside from the Vitamin D protocol which has a similar success rate to busting, oxygen will be your best friend. It’s worth the money! Are you sure insurance won’t cover it? CMS approved it and insurance cos usually follow suit. Unless you’ve tried to get it in the last 6 months I’d try again. There is a trusted Dr list in the general board. May be one is close to you and you will get real help. Where are you located? My heart goes out to you. I couldn’t imagine how hard this is on you.
    2 points
  6. Haven't been through it. I don't think the D3 regimen is likely to have any super-quick effect, but it might shorten your cycle. I don't know about that regimen and pregnancy, but I'll bet someone might. Oxygen seems to me to be by far your best bet if hormonal shifts don't do the job for you. Without a prescription, you can set up a welding O2 system, as a good percentage of people with CH do. That can be done in a couple of days, for maybe $200-$250.
    2 points
  7. There might be some thoughts in here that you might want to try. This is copied from this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ “Treatments” without O2 or other meds (or as supplements to other treatments) A lot of people arrive here with nothing effective to treat their CH, either because they have crappy doctors or because they just got diagnosed (or self-diagnosed) or because they have come to believe that they have “tried everything” and “nothing works.” That latter might in fact sometimes be the case, but most often we find that (a) they haven’t actually “tried everything” (such as busting, or D3, or other methods), and/or (b) what they did try was prescribed or delivered ineffectively, as I described above. Here are some strategies that help some people abort or prevent attacks (again, I’m not addressing busting here, though of course it must be seriously considered since it’s a highly-effective, low-side-effect method for ending cycles and possibly preventing them). Some people get relief from bodywork (massage, chiropractic, craniosacral, etc.) and some from other “alternative” methods such as acupuncture. Most people don’t. 1. Preventive Batch has observed that allergies (even if they aren’t causing allergy symptoms) can cause or ramp up CH, so he recommends Benadryl at 25mg four times a day, including one at bedtime. Other anti-allergy medicines, such as Claritin, seem to help some people. Most people with CH have learned that alcohol is a trigger. But there are many other triggers that are not so obvious. See this thread: https://clusterbusters.org/forums/topic/4568-triggers/ Drinking lots and lots of water seems to help prevent or lessen attacks. A ketogenic diet seems to help prevent or lessen attacks. Magnesium helps some, taken at 400mg daily, started about a month or so before an anticipated cycle. If taking magnesium for a relatively long time, calcium should be added. It also can help with a typical side effect of verapamil, constipation. A licorice root protocol has been helpful for some. You can read about that here: https://clusterbusters.org/forums/topic/941-licorice-root-summary/ Kudzu root has helped some. Dosages are not clear to me. Caution is recommended with all supplements! Know what you’re doing. Some have said that deeply massaging the “cluster knot” in their neck helps them. 2. Abortive Caffeine/taurine. For some people, caffeine alone can help to stop an attack or lessen the severity of the attack. Some folks keep strong coffee on hand for that purpose. Some folks use caffeine pills, and some people take taurine pills along with caffeine pills. They take those pills at the first hint of an attack, or a couple of hours before a predictable attack time. Many use energy beverages. Because some ingredient in energy beverages in addition to caffeine is believed to help with attacks (believed to be taurine), many people use those. I recommend energy shots (such as 5-Hour Energy) at first sign of an attack. Shots are quick to drink down and they have more caffeine than energy drinks, such as RedBull, that are much larger. Many people say the shots work best for them when they are as cold as possible. For many people, energy shots/drinks don’t keep them up even if they drink them at night. In addition to all the “standard” energy beverages, some people like “V-8+Energy” drinks. “Brain freeze.” You can drink ice water through a straw aimed at the roof of your mouth, with the objective of creating “brain freeze,” or hold something cold, such as frozen juice concentrate, against the roof of your mouth. Some people find that taking melatonin at bedtime helps (not wise to take both melatonin and Benadryl at night.). Melatonin is depleted in people with CH during their cycles. Some people find that it helps to supplement it. You could start with about 10mg, and go up or down as appropriate. Some people get into the high 20mgs, or even low 30s, before they reach a level that helps. Needless to say, you have to find what works without making you dysfunctionally groggy. Several people have reported that DMT is an excellent abortive for them. You can read more about that here: https://clusterbusters.org/forums/topic/7444-dmt-first-time-finding-an-effective-abortive/ Feet in very hot bathtub. There’s a theory that this moves blood from your head to other parts of your body. Some people find that putting their hands in very hot water also has an effect on attacks. People have reported that going from feet in a hot bathtub to a cool room and back to the hot bathtub helps the effect. Some people don’t just stand in a very hot bath but will sit or lay in the hot water. Ice packs help some people. Cold air. One study showed that inhaling cold air was nearly as effective as using oxygen. Air conditioning vents in the home or the car are good for this. If it’s cold outside where you are, you could try that. Vigorous exercise. Some people find that vigorous exercise (running; doing jumping jacks, etc.) will stop or slow down a CH attack. Lime/baking soda. One fellow said that this helped his attacks: the juice of a lime or two along with a teaspoon of baking soda in a cup of filtered (non-tap) water. Sex. Some people have reported that sex stops their attacks. Other people have been amazed that it’s even possible to consider sex during an attack.
    2 points
  8. My techniques when I have nothing effective to abort: Pacing in an upright position ** Breath through open mouth to stop crushing my teeth. Exhale quickly and inhale deeply Keep head upright, and shoulders back to allow deep breathing pathways Keep body temperature down with cool clothing/ remove jackets /heavy shirts /jeans/scarves etc ' Do not lie down', for me the stabbing / pulsing increases 3 to 4 times from an already KIP 10 situation. Staggering difference between standing and lying down. I assume because more blood is flowing to the head !! When standing/pacing the stabbing through the eye is opprox every 20 to 60 seconds, if lying down can be approx every 5 to 15 seconds, Each stab can be like breaking a bone !! I feel sick to the stomach with pain and nausea ! so STAND and pace Keep pacing Cold or iced strong coffee and/or red bull / or any other coffee taurine energy drink if available Darkest possible glasses to shut out the light so help not to squeeze the eye closed for such long periods Tissues if need to blow nose / clear breathing pathways Try to eat anything with a high ginger content Where possible I remove myself from any social situation in a seperate space, as I can curse loudly and grunt and moan somewhat ** Reminder, to keep mouth open for breathing. Don't crush / grind teeth, so important for long term dental health, could eventually grind the molars flat which is costly to fix. If I have to grind to tolerate the pain, chew on matches/toothpicks or a soft piece of timber or thick silicon type of plastic that you cannot grind through Cold/ice pack, if no cold pack rinse cold water over head or wrap soaked T-shirt /towel over head, and renew with cold water regularly If noisy use ear protection, however with biggest/loosest possible fit as ear pads can push painfully on the side of head. Not noise cancelling as frequency is audible during the attack Silence and darkness is best More coffee and/or red bull/ similar, cold or iced More cold packs if available More deep breathing The crushing and stabbing feelings are completely agonising so keep pacing and breath and try to meditate through it ' ZEN Keep pacing, if I have to sit because have been pacing for an hour or more already, again keeping head upright sit upright, and pace again as soon as possible This can last between 1.5 to 3 hours. AND REPEAT daily until I can Bust......... Power Hope Courage Axel_B
    1 point
  9. Just curious if you have tried the rapid release or the ER (extended release)? I am on the ER and many people say that it doesn't help them but the rapid release has been mentioned on the site with pretty good success (not complete cessation but cutting duration and what not). I would definitely start the D3 as it really has positive responses from many on here.
    1 point
  10. Greetings Shaun, no I have never heard of Topiramate. Just had a little look online, and will mention this to my doctor. After the verapamil and a couple of other pharmaceutical blockers that didn't work, I have become a CH pharmaceutical sceptic, and really have started to lean towards proven alternative methods for a real bust. I will probably go for LSA/ RC seeds or similar treatment in the near future. Have enough for 2 more MM busts and then I will be desperately seeking new alternatives........
    1 point
  11. I learned that if I step into the cold swimming pool at the onset, within 5 minutes I can abort by inducing vasoconstriction
    1 point
  12. 'There is light at the end of the tunnel....................
    1 point
  13. Sorry to say but your gonna have to forget about the cost and get OXYGEN!!!!!!
    1 point
  14. OXYGEN!!!...your best bet non-medication (traditional or alternative) hit killer. no side effects, no baby harm or medication pass thru, quick, easy, relatively cheap in my experience...tho i would have freely gone into debt for the sanity, perhaps life, saving benefit. when insurance didn't pay for me i made a self pay deal with the O2 shop. welding O2 will bypass all the hassle.... except for the logistics. is too bad, but it won't change cycle length. proper flow, mask, and technique all critical.
    1 point
  15. That's as good of an excuse as any! LOL
    1 point
  16. Congratulations on being free from attacks. Take the opportunity to enjoy yourself first. Then, concern yourself with the particulars: You may go years without another episode. Others may be capable of advising you; respectfully, I shy away from that. Again, concern yourself with living life and then put your house in order. I had 5 days with only 4 attacks per day and I enjoyed a few dinners in Little Italy. Heck, I went these past 9 days with only one 3 day migraine, and I cooked a lot. Eventually, I got around to the laundry. All of my bills are set up around my disbursement (set it and forget it). If you can afford it, let a fiduciary and accountant handle your finances. I can't, and so I make sure to automate all of my bookkeeping, investing, and bill pay. That is the other trick, delegate every da$@ thing you can (away). Or, what you can trust in another hand. Life is too short to be concerned about the hassles we once had when we had the six-figure lifestyle. It is for me. If you still have investments, property, and hard assets, I understand. It can be easier said than done.
    1 point
  17. Ooh pro tip there for the pic uploads - thanks.
    1 point
×
×
  • Create New...